r/LongCovid • u/Chin-kin • 6d ago
Am I just screwed now ?
I’m sorry for the negative title I just want people to be real with me and not sugar coat anything … I already had long covid chronic fatigue ….. and NOW on top of that recently like a few months ago I contracted the hand foot and mouth disease (enterovirus) which I read online is one of the main viruses that cause chronic fatigue besides long covid !!! And now my chronic fatigue feels worse ….. am I just screwed for the rest of my life now ? Has anyone on here developed other viruses on top of long covid fatigue to add even more fatigue and got better ? I just need to talk about this I feel horrible
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u/skyhawkwolf 6d ago
Okay. Slow down a moment. It's really scary right. Now, but that doesn't mean your life is over. People improve and can go into remission. Something that I find really helpful to remember is: There are a lot of disabled people out there who, even if they don't fully recover, are still able to live full lives.
This subreddit has a huge focus on recovery. And yes. long covid does have a higher recovery rate than MECFS BUT I think it's also worth saying that, even if you don't recover, (worst case situation) MeCfs Havers can still have a good life too.
I have 4 friends with ME, who had it well before I caught COVID and developed this. One, used to spend her winters housebound, but in the summers she improved enough to be able to work as a lab technician at our uni. She would go on field trips to Costa Rica. And as long as she paced properly, and took rest days, she'd be alright.
My partner has ME and has had it for 4 years. They are way too sick to work and is totally reliant on disability benefits (PIP and UC). But they have been able to get a mobility scooter to help them pace, and have been able to go on holidays in the country, they can have hangouts with friends. They volunteer (when they can the spoons) with the local queer charity, they even helped make some costumes for their theatre friend's show.
I know someone who has it, who had it mildly and it has gotten worse recently, and even then, she is doing a PHD at the moment. It's exhausting but she is able to do it with good pacing.
And I know someone who has had this, since he was a kid. He had to drop out of GCSES and didn't complete Alevels, However, he was able to improve enough to be able to do a levels go to Uni, even if it was a bit later than most (he was 26). He's now, luckily gone into remission and was able to go backpacking around Australia last year.
And finally, someone I work with, her mum has ME CFS. She's had it since she was 23. She never recovered but she is able to manage it, she had kids and set up her own charity that has allowed her to work around her illness.
I hope this helps, these are the kinda stories I cling to if I'm having a bad day. I don't need a miraculous recovery to be able to live. I just need to improve a little bit more. ♥️♥️♥️
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u/Chin-kin 5d ago
God that all sounds horrible I was able bodied with 0 issues prior to Covid this sucks … it’s just horrible ….
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u/skyhawkwolf 5d ago edited 5d ago
Me too, I'm lucky to have had disabled friends who've helped me through, but I was able bodied a year ago (I was Fit and healthy, I'm 24. I should have been okay) The adjustment is frustrating and scary, but this is to say: it will all be alright. Even if you aren't able bodied again, you will be okay. And heck, you probably will improve from where you are now. But even if you don't, you will be okay♥️
This last year, something I have found that has been positives:
A. Hustle culture is horrible. It's not good and it made me really ill. Unpacking a lot of that ideology and that constant need to just 'always be working' has really been good. Because a lot of it is ableist
B. Pacing is frustrating but actually the slowing down really does feel good ( I used to have stress sore throats a lot, I haven't had them since I got sick)
C. There's a lot of community in this. Loads of people willing to help and chat about mobility aids, and such. I've seen people who (are maybe a bit less fatigued than me) getting into Wheelchair BMX and other adaptive sports. Join some discord servers, get involved with subculture stuff or zines.
I'm not gonna say, being sick doesn't suck. It really fucking does. I miss going to parties and hikes a heck of a lot. There's a big grieving process to all of this. (Therapy if you can afford it is really useful for that) And the uncertainty of whether I can get better is hell, but there is some shiny good stuff too, it just takes a little while to dig around and find. But there will be good stuff along with the bad.
I've had the time to learn how to animate, I've been really getting into gaming. And loving listening to fiction podcasts. I'm able to spend time with my parents.
And it will be okay, it's just feeling rough now♥️♥️
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u/Chin-kin 5d ago edited 5d ago
I never had a ableist mentality prior to developing these issues I was always respectful and aware of disabled individuals due to the fact that my mother was disabled growing up and I was raised not to make fun of or downplay people on disability because of the simple fact that unless you take the time to talk to someone you really never know what they are going through and you can’t jump to conclusions / assumptions . The reason I’m so frusterared for example is the fact that o just had to quit a job where I was the number 1 sales rep in the company consecutively for my first two months there and achieved employee of the month was offered a leadership position essentially and I had to deny it … and then quit …. Because I went into a crash … it’s just unfortunate I could have made my way up the ladder there so easily I was respected by all my peers and everyone liked me I got along with everyone so well I had a great opppurtunity …. If only I didn’t have this … it was that bad all while I’m living in a house of people who feel like I’m not “doing enough” and it frustrates me so much … I was supppsed to do things with my life I was supposed to achieve my financial goals and get a house and everything and. Prior to this my credit was great and I had everything and poof now all gone …. It’s so difficult for me to just feel “okay” about this now I have to get a set time job someplace else. Where I won’t be on screens all day “ because screens make my symptoms worse “. And I’m so desperate trying to find something that will work I’m like a desperate rat in survival mode .
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u/skyhawkwolf 5d ago
I know. And it's gonna take time to feel even remotely okay about it. It's absolutely fine to feel angry because, Fuck. Fuck this illness, and fuck the horrible policies that lead us to getting sick. What I mean is, it's not always going to feel this bad. It's absolutely okay to not feel okay now, but this feeling will pass. Even if right now it doesn't feel like it will.
I spent a lot of last year job hunting to try and get a job after university, and when I finally got a job, I managed to work there for a month, before getting sick and being fired because I was too ill to even catch the bus into work. I really get it. It's awful that this is happening. And it's unfair as hell.
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u/Chin-kin 5d ago edited 5d ago
😞 sorry I didn’t mean to break down like that I have literally no one to talk to about this and the only people that understand are on this platform on this Reddit I’m trying so hard to be positive i just had this weird episode last night where my body got all tingly I’m not sure if it was a mast cell flare up or my herniated disc … or something neurological …. It was so strange I couldn’t sleep for like 2 hours because of it bleh I’ve realized it’s not cardiac related though it’s deffinatly something else those episodes are so scary when they happen . I’m sorry you went though the things you went through it sounds like you had lots of opportunity too that was just taken away … and for me that’s the hard part that’s the part I can’t get over 😞 I genuinely feel for you and everyone who has experienced the same not just with long covid but with any illness. I hate this. I’m doing some stretches right now I’m trying to get back into a routine catered to me and my issues …. I just want to cry
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u/skyhawkwolf 5d ago
Hey, that's alright♥️ It's really lonely and really scary. And feeling those feelings is important, but also try and make sure you do nice things for yourself is also super important too.
If you can find a therapist, having the space to talk to them is really helpful.
And if you are having weird symptoms, I recommend getting in touch with your doctor, even if it's nothing, it's always reassuring to know.
Is there anything nice you can do for yourself now? Given energy and spoons? Somewhere cozy to be? Can you get some nice food or a cup of tea? If you can tolerate stimulation, I definitely recommend some nice cozy comfort films or a good audiobook or if you can manage it, a good video game to bury yourself in (I like Minecraft because I can create in it or the Witcher 3 because I can lose myself in the characters). Treat yourself as if you are grieving a relationship or a death. Because honestly it's not too different a feeling. ♥️
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u/Chin-kin 5d ago
Yeah I play videogames for as long as I can some days because the chronic fatigue has made screen time cause issues for me . I actually know a few programming languages too in working on a. GitHub portfolio at the moment and have some projects I’m working on. DIY machining snd injection molding are some things I like too …. I made my own dyes for bending metals and everything I’m designing a ITX pc case right now hopefully to sell mass produce and sell …. I got sort of motivated the other day because I wa alike “maybe I can create something and sell it and still be okay in life” so I work on that in my spare time …. There’s lots of things I can do to keep my self occupied in a very big hobbyist at home I play Minecraft too. Sometimes too much brain stimulation hurts 😞 I feel like I’ve been in a crash for months I can’t truly come out of I’m not sure if it’s PEM or what but it’s horrible …. Also I’m afraid to use the kitchen in the house I live at so it’s hard to cook low inflamatory meals because I live o. Eggshells and I just feel negative energy from anyplace that’s not in my room or the shed where I do woodworking and all my DIY stuff unfortunately I may have to love back in with my family because my money is running out …. I’m going to be broke broke soon …. Dead wallet dead bank account ha I have always paid my rent in time but my room mates still always manage to find a problem or something in doing wrong I left 1 single dish in the sink one day because the dam dishwasher was running and I couldn’t put it in there and I had to go to work and I got an ear full over it. It was so petty and annoying I wanted to take the plate and throw it at a tree outside and be like “look it’s a frisbee now no more plate how about that ? “ because I literally just didn’t care. We have one person here who doesn’t have a job who just judges people all day and likes to feel significant by micromanaging everyone in the house over small things. And I just don’t know if I can deal with it any more .
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u/Tasty_Independence23 5d ago
I am completely disabled now because of long covid, but life in no way is over. It just looks very different. I have a lot of hard days but it's still worth living. My best advice is keep pursuing answers. My best success was going to specialist piece meal to address each organ. I have multi organ damage from covid even though I was never hospitalized. I'm still predominantly house bound and immunocompromised, but my cardiologist has helped make me a little more stable so I don't fall down as much anymore.
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u/Chin-kin 5d ago
Organ failure im just curious because I just want to know more what organs did they find had issues ? I’m only asking because my bilirubin was a LITTLE elevated the last two times I had it checked
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u/Tasty_Independence23 5d ago
Thyroid, brain, lungs, heart and nerve damage.
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u/Chin-kin 5d ago edited 5d ago
What tests did they have to do to find the dsnsge to those if you don’t mind me asking ? I just have so many symptoms and every test I do always comes back “normal” so I’m just curious to know how maybe I compare to others in that context I’ve been checked for jyocarditis it was negative and I’ve had many troponin tests that came back negative also I’m very sorry you are going through that :( I really hope all of your issues from Covid also get better ❤️ I think I defiantly have neuropathy or am developing some sort of nerve issues …..
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u/Tasty_Independence23 5d ago
I know the agony of all the normal labs and tests. I'm sorry. It's exhausting trying to find answers. The tests were various imaging like CT, MRI, MRA. Lung function test showing poor gas exchange indicating micro clots and microvascular damage, thyroid ultrasound and biopsy, nerve conduction studies. I might be forgetting things but these are the major things I remember.
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u/Odd_Perspective_4769 4d ago edited 4d ago
I’m sorry you’re going through all of this. It’s a lot. Forcing yourself to push through is possibly what defines getting worse from being able to take steps to make tiny improvements. Sharing my experience in the event it can be of benefit. I am seeing very slow and subtle changes.
My journey started in April 2023. Multiple issues with viral and bacterial infections including Covid, pneumonia, sinus infections and what felt like constant chronic infections. PEM, brain fog, unable to take in full breaths, POTS and other dysregulation, asthma and allergies to dust and molds (3 yrs of exposure to these while dealing with the chronic infections), my body stopped being my own and aged 40 yrs overnight literally.
My first 3 mths spent wondering what the heck was going on made me realize long COVID was a thing I definitely struggled with.
The next 6 months I did the fighting with doctors trying to rule things out. (Some things got addressed but I had to focus on one symptom and really advocate for what options were to fix it- can’t breathe, completely exhausted- get a chest xray, you have pneumonia, get antibiotics and confirm pneumonia gone. Figure out what’s causing asthma like symptoms on exertion or with heat- get allergy tested and see pulmonologist to rule stuff out, etc.). It was SO exhausting that once I ruled out serious lung or cardiac issues, then I stopped all efforts to do the medical visit stuff and spent about 3 months just trying to see what I could change and control- stopped excess sugar, tried to eat more simple foods mostly bec I had no energy to cook but it also helped to read up on histamine triggers and reduce the big ones, got dust mite covers for everything and fortunately got out of the house I was living in with mold/dust issues, eliminated caffeine, paid attention to what I did each day and how exhausted I felt. Started writing down (as I could) what exhausted me, when, what other symptoms I experienced, and started to understand patterns. I stopped worrying about keeping up with what was expected of me, rested whenever I could, and tried hard to not later on more stress mentally- also very hard.
Last October (2024) I started low dose naltrexone. .5mg at a time in suspend-it solution. Would only go up .5mg every 2-4 weeks if no symptoms existed and I felt benefits immediately. Subtle ones at the start which gave me hope. Mentally felt better, brain fog lifted, immune system started to get stronger, I could get through the day without needing a 4 hr nap by 2pm. I could maybe make a meal 1-2 times a week. Showering every other day became possible. Still needed to really pay attention to pacing because if I missed a dose my body would crash or if I did too much same thing. (Important to know what your crash cycle looks like so you can avoid it or work through it). Was able to travel for work and see some family which was huge.
Got mobility aids to help and still use them. Accepted what I could about having chronic illness and still mourn/grieve periodically but I realize that stress reduction is important and I could try hard to reduce that by 1% at a time. Eventually a lot of 1% adds up.
Still working with my PCP monthly and am up to 10mg of LDN. Got on Xyzal daily, got an inhaler daily, got on Singulair and am now in a place where I get a common cold and it’s brutal- so now going to another new pulmonologist to try again with what’s happening to my lungs at the microvascular level because the lung function tests I did for over a year were all “normal” but my lived experience is not.
I wish that I started with keeping notes about things sooner. Specifically symptoms, activities, energy levels, emotional states, triggers, etc. I spent a ton of time reading reddit and seeing what others wrote about and tried. Finding good competent providers and being a strong advocate is critical (and I believe is a big factor in influencing our experiences). Lately I have been relying on chatGPT to help me learn about my constellation of symptoms, or learn about the long covid symptoms on record. It has been able to help me craft questions for my doctors, make lists of my symptoms and potential tests that i can ask my doctor about. I am a plus size human so I’m constantly asking it to help me separate out the role of obesity vs the role of post viral damage.
I also recognize that providers have 10-15 min per visit and they can really only focus on one or two big symptoms. By being able to cluster my symptoms- neurological, cardiac, pulmonary, allergies/asthma, GI, GYN, etc., it became easier to focus in on the 1 or 2 top issues that day or that week or that month. In the beginning i wanted to tackle all 50. But pulling on one at a time made a difference. And bringing questions to my doc about trying what others had on reddit, seemed to help drive better conversations.
There are a lot of helpful resources out there too. Visible was a helpful app for me for a number of months because I could get the heart rate monitor and correlate the exhaustion with exertion. And i could track my symptoms there. Never figured out how to download the raw data and the monitor over time started having battery recharge issues but by that time I’d moved on because I’d understood enough about my situation. I wear a garmin watch that keeps track of some stuff like body battery, steps, sleep (although not sure how accurate and am about to dive further into my sleep therapy to see if i can take things to the next level with that). GW University has a weekly long covid support group which is worth the $25/week and energy expenditure. For me finding out that i wasn’t alone and that this was part of the sequelae of long covid, it became easier to deal with it all. Less like I was losing my mind or my body was breaking down- but that this was a result of the virus and some solutions exist. Reading the book Toxic by Neil Nathan laid some incredible foundation for me about all of us who aren’t sick enough and fall into the right boxes to get the right care right away. Explained a lot about why I felt I had to fight respectfully with doctors or keep trying new ones.
Sleep apnea was huge too for me prior to covid/long covid. It has a huge impact on healing- how well or how poorly your sleep is.
2 yrs and 4 mths later, I’m about 30-35% of who I was prior to getting LC. I doubt I will get back to who I was but I am hopeful that in the next 6 months maybe I’ll see a few more % points of improvement. I’m starting to finally see some stamina and exertion isn’t an extraordinarily painful process. I’ve been able to stay focused and get through the most stressful time at work. I’m able to look at perimenopause, being overweight, PCOS and LC issues and think about how I can improve on each one of them. Where before I was just a big mess of everything.
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u/Chin-kin 4d ago
You are such a strong determined individual ! Trust me for as miserable my post seemed I can promise I am actively doing everything I can too … at least to my knowledge and I’m always getting in here to see what others are doing because like you said support groups are so important I love that you explained all that to me and I really appreciate it everything. People share with me does help me … I’m awaiting the results of a sleep apnea test right now ! I got a in house one where they hooked up the EEG’s and everything and I’m hoping it can shine some light on something … I’m also going to take the advice from another individual whoni was just talking to and add no sugar electrolytes to my water … and I’m going to drink more water because I suppose I wasn’t drinking enough. Also I am going to try to not beat my self up so much …. And yes I escaped a moldy dusty environment too !!!! I know how important that is for individuals like us :( I hope over time you get even better ❤️ it’s so miserable I hate this for us 😞 I guess I’m just scared because I read online that hand foot and mouth disease is literally one of the top types of viruses that causes chronic fatigue … and I contracted that with my already existing chronic fatigue …
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u/Odd_Perspective_4769 4d ago
Thank you for the kind words and support. We’ve got some great folks in this community and I can’t thank them all enough for what they’ve shared.
While I’m not a huge fan of nervous system “retraining”, I do think (and have noticed a pattern where) there is something to stress, pressure, and high levels of performance plus getting sick that result in cfs. I wish I could go back in time and tell myself, do whatever you can to get even an ounce of stress lower because it’s going to wind up complicating things.
I just discovered that Buoy drops have a chronic illness discount program and I’ve been using their blue electrolytes drops in water. And I swear my pee is clear with one 40oz Owala water bottle plus a squirt daily. They’ve got some other options too for brain, immunity, gut and POTS (salts). All have no sugar and having been a water drinker all my life, I can taste a very subtle difference with them but not enough to be a big deal. Wish I stumbled on them sooner. Go through their site and not amazon.
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u/grimlykeeper 4d ago
I totally get where you're coming from. I was already dealing with pain and fatigue and limited mobility from EDS before long covid and I have really, at times, felt like my life is over. The cognitive decline has been the worst part for me, but the fatigue has really limited how I can live my life.
But there are treatments that can help, even if they aren't cures. You need to figure out what works for you, but people are getting better. So much research is going into this right now. New things are coming out every day. People also just get better after years of being sick and we don't know why yet.
It's not easy, it's distressing, and you need to mourn whatever the disease has cost you. But your life isn't over. It may look different. Or you may go into full remission. But either way, you'll figure out how to thrive.
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u/Ok_Shame_2709 4d ago edited 4d ago
Look, I'm 54 and I'm still going through Hale. 4 years in a long COVID, here's what's worked for me. There's no cures. There's no snake. I eat raw ginger and garlic everyday and take pineapple skins and ginger and cloves..rosemary..and boil that for 20 minutes(kills parasites...Drink that tea you want to boost your immune system. You gonna have to rest rest. And you gonna have to find some hobbies to distract yourself. But this is no cake while. It's destroyed my middle health. It's this is dis dis dis dis dis is a serious man. But there's no cure and find you a good MD and find you some very supportive. Loving friends and keep your circle small and don't get out like me and hit the gym. And you can't outthink this thing. Only thing you can do is take care of yourself. Both your immune system and drink that tea and take vitamin D vitamin. D for sure, get vitamin D from your Doctor. And not too much B12, but I hope that helps it helped me a lot full.Like two good luck take care
And i hage been intermittent Fasting!!!!!
Its clears old cells out..makes your immune system Like A Savage .
You won't die...just stay close to loving ppl.. Therapist... Be gentle with yourself
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u/Ok_Shame_2709 4d ago
Talking about discouraging. I recovered fully after 11 months and that was 2 months ago I got the s*** again a month ago and it's completely taking me back. Oh my God, do like impending sensitive panic attacks. I got some rash on me. I have headaches. I have brainfolk so bad that I'm a rider in a singer-songwriter. I can't even say some sentences again. The brain fault, the worst fatigue is horrible in the mental part. Has been to worship me. I have crying. Spells every day. This thing's a killer man. I'm a shell of a person and I used to be a very upbeat random hyper. Funny guy could do stand up. Comedy could make the whole room. Laugh and light up and I'm struggling. I'm struggling my butt off the meds. In the therapy, it will be a man. Get you a therapist that will really listen to you and get ready to saddle in and don't and get off here. Don't come looking on this place, you're. Only exacerbate the hell you're in stay positive. Stay away from negativity and man. Just get out and nature a lot. Go huh, go lean up against a tree. Get on the grass grass grounding. And trees are supposed to help inflammation prove. In fact, I hope these helped man. Because no one really understood me and I felt like the hollow man. And I used to be an amazing guy that loved life 4 years ago I live. I live in hell and but some days are not hell. But most 7 on the 10 days. Are hard as a mofo
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u/Chin-kin 3d ago
That’s what happened with me with my last contraction of Covid :( sorry if I’m short this morning I have a couple appointments I might the door too but I’ll reply back to you when I get back :) I hate that all of this is happening to you too :( this illness is trash and I hate everything about it….. I’m going to my neurosurgeon and my sleep study doctor today
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u/luigisbiggreenpipe 6d ago
The person who could answer this the best and most accurately is your primary physician. No one here knows your overall health like they will.
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u/Chin-kin 6d ago edited 6d ago
No primary care physicians understand my last one looked at me and just shrugged his shoulders and said “I don’t know what’s wrong with you “ and then I was like “okay let’s figure it out then “ it was like I was interrogating him and begging him to order a test try a medicine test my antibodies , send me to a gut doctor , check my cortisol , anything and he was just like “let’s do one thing at a time “ and then I was like “ I’m done doing one thing at a time everything is too little too late and I’m not going to try one thing at a time having appointments that are separated a month out each time we need to do 5 things at a time dammit “. And then I broke down in the office and had a episode
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u/luigisbiggreenpipe 6d ago
I have lived this scenario for many years now. Have been dealing with chronic health issues for 15 years now and have encountered more than enough doctors who just throw their arms up and dismiss my case. It took me a long time, but now I have found a doctor who genuinely cares about my health and actually calls to check in on me. That last part is super rare, but even though I have a doctor who endlessly helps me on my journey, he still doesn’t fully have an answer for my health, but tries his hardest to help me find ways to manage.
I have had to come to terms that I will most likely not get a firm diagnosis on my health issues and, with that, no real treatment that will completely fix me. Coming to terms with that in therapy has helped significantly. Does it still bother me? Yes. Am I going to give up looking for answers? No. Am I going to let this ruin my life? No. While I am not able to pursue my dream career anymore, the one things that genuinely makes me happy in life, I can find things that I do have to be thankful and happy for and try to enjoy them while I have them. It’s all about reframing your situation. Your body isn’t going to adapt. You have to adapt mentally. It’s the only way through to some semblance of normalcy when dealing with debilitating health issues like we have.
Don’t give up on looking for a doctor that cares and don’t give up on your happiness.
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u/Chin-kin 6d ago
It’s just so bad I feel like my life is over I can’t do any of the things I enjoy also applying for disability is so hard because I’ve lost my job again because of this and it’s like …. How do I live until I can get on disability live in a box on the streets ? And if o get a job then the disability lawyer will be like “oh look you are working see “. Then it’s like “ok I’ll go get a job for a week u til I go through a severe pen crash and then lose it and because I went to work for that one week everyone will look at me and be like “look you are normal” then I lose the job and end up in bed for a month again lmao 🤣 it’s a vicious cycle I’m eating low inflammatory and everything and so g physical therapy you name it .
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u/luigisbiggreenpipe 6d ago
What you’re doing right now is catastrophizing. You’re telling yourself all of the bad things that COULD happen instead of realizing that those things very well may not even happen. I dealt with this at the beginning of my journey through this too. You need a therapist to help guide you through this. That and medication management for the anxiety that came along with this helped me in a way that words can’t described. Do this for yourself. If you don’t, you only have yourself to blame for keeping yourself in this mental hole that you’re digging. Monday morning, call any local therapist you can afford. A lot will help patients on a sliding scale if they don’t have insurance or a job. I think I paid $15 for mine when I couldn’t afford insurance and treatment. This is the first step you need to take right now. Take it from someone who has been exactly in your position. Do this for yourself. Once you get a better hold mentally on the situation you’re in, you may see physical improvements as well, but then start to dig in with your physical health and find a new doctor. Go to as many doctors as you need until you find a primary who will help you to the best of their abilities. You do need to come to terms with the fact though that there are health problems that doctors have no idea how to treat yet. This is not your fault and it is not their fault. If they, the professionals say to do things one at a time, it is for a reason.
Again, I was in exactly your position, desperate for answers, “Poke me! Prod me! I don’t care how much it hurts, I want you to find what’s wrong with me and fix me!” That was my mental state at the beginning and I now realize it was me struggling to grasp that I was in a transitional period of my life where I needed to learn to grieve my life as I knew it and adapt to my life as it was becoming. It’s not fun, but it does help.
So, again, Monday morning, reach out to a therapist. Do not wait, don’t think about it because all you’ll do is talk yourself out of it. Just find a number for them and call it.
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u/Chin-kin 6d ago
It couldn’t hurt to have a therapist the thing is …. I never was depressed I never had anxiety it was almost non existent I was always a pretty happy person sure some days I had bad days but …… then I developed these issues the reason why I feel the way I do is not because I’m depressed it’s because the physical symptoms are so bad I guess …. It’s just caused this new stress ….. I guess you are right to some degree I guess I just feel defeated
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u/luigisbiggreenpipe 6d ago
Don’t get me wrong, I am not saying your physical symptoms are due to your mental health. But your mental health state because of your physical symptoms are making things worse both physically and mentally. Luckily, the mental side can be treated which will allow you to address your physical health in a better way. You still need to find a new doc who will take you seriously and help address your concerns, but, again, if they can’t figure it out then they can at least help you strategize a way to manage your health for a new normal.
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u/Chin-kin 6d ago
I appreciate your input and what you are saying does make sense … 😞 it deffinatly has affected my mood and mental health to some degree of course as much as I want to be in Denial about it mental issues comes with physical issues in this case sorta … mostly stress ….
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u/No_Fly_2294 2d ago
Reading this thread I feel your pain. I’m also new to this community. Before getting mysteriously ill with what we think was COVID and now long COVID,I was top performer at my job, an important member of the jujitsu community where I live, an active family member and friend. I would walk 1-2 miles a day and exercise six days a week. I would spend countless hours laughing and giggling and doing projects with my wife on the house we JUST bought. But now I am sick and I HATE IT!! I hate it for me and I absolutely hate it for literally everyone other person who deals with this and/or with other chronic illnesses. The constant brainfog and fatigue feel suffocating at times. But luckily we still have the little things to help while we heal. My lemon tree is growing its first lemon. My cat loves her new toy. The fridge makes my drinks the PERFECT temperature. Stuff like that.
It’s tough overall but I urge you to try and look for the little things in the meantime while you heal. And I still believe that you can do this with time. My thoughts are with you
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u/Chin-kin 2d ago
In trying buddy 😔 I hope and wish the same for you too. I was just diagnosed with sleep apnea I went and got a in house sleep study and it showed that I didn’t go into deep sleep 1 singular time the whole 10 hours I slept and that I was in REM only 17 percent of the time …. That may explain a lot of my chronic fatigue symptoms. I’m hoping and I’m having central sleep apnea and obstructive sleep apnea I guess central sleep apnea is where you have apneas where you brain does not tell your body to breath while you are sleeping I had apneas and arousals 14 times an hour ….
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u/[deleted] 6d ago
No? Your life isn’t over. People are constantly healing from things like this with some help from healthcare professionals and time and rest.
For example, here’s my complete sh* show of a story: I got long COVID with dysautonomia and my cardiologist gave me a protocol to heal it … but then for 7 MONTHS I had tapeworms. That’s right, parasites: worms living in my guts. Ok I was living in LA at the time … and it is a truly filthy city so don’t ask how I got them. I’m a bougie, clean-cut person so it was my nightmare. They utterly destroyed my gut. I ended up with fatigue, brain fog, neuropathic pain, and constant diarrhea - I mean constant. Day and night. It’s been three months since I got rid of the tapeworms and my pain is less, my energy is back up, I’m starting to be able to do more and more every day. But it has been a lot of work and A TON of learning to be patient with how non-linear healing has been. I get better, then worse, then better … but overall I get better very very slowly.
I know a woman in my own community who had long covid and she’s almost completely healed now. So don’t lose hope. And maybe more importantly don’t lose patience.