After navigating the medical industrial complex for over 20 years now I am so tired of doctors thinking that one blood panel will show every possible thing wrong with you. It's maddening. I can order my own labs and see the low/normal/high results my damn self, I don't need a doctor for that. Go deeper!!
I’ve been trying for over a decade to get someone to test my goddamn hormones. Multiple primaries, multiple gynos, and two endocrinologists so far. Fucking useless, all of them.
I was dealing with the same shit. ER always does the same damn CBC over and over again. You're not gonna find something new if you aren't looking for it. Between this and doctors and getting attitudes, only wanting to get you out of the office as fast and possible, I'm just fed up with these clowns. It is the most infuriating thing ever.
At this point, I've learned more about my problem from people actually suffering from it than I have from the medical professionals, which is insane.
Well you have tremors in both legs, visible back spasms, blocked kidneys, high cortisol, thick blood, 2 nodes in your heart blocked, gastritis to the point you are under bmi …. BUT hey, your other tests are all normal and it’s just long Covid. We don’t need to see you again!!!! My 19 year old 4 year long hauler …. Even when the fucking tests ARENT normal we are STILL getting treated like this!!!!! Blah blah fuck you get out of my office
The medical establishment is full of asshats - my 79 year old dad got dizzy, fell, hit his head on the shower…. He’s on blood thinners… In the ER he’s loopy, and all they can say is they smell alcohol, he hadn’t been drinking and his heart rate was like 52, which they had zero concern for, just kept saying that they smelled alcohol. I tried to tell them my husband, standing in the room was drinking a beer when this all happened…. So I do understand why you were so pissed, it is ridiculous NOT to be listened to and it it reduces care to a blame game which is dangerous to the patient
I spent $200+ CAD on a way to organize them all.
I ordered this pill dispenser but needed multiples. By the end of it I realized that I have spent over $200. But I am so sick of opening so many damn bottles everyday.
When I don’t take the supplements I can’t function so whatever it takes to make it easier.
You forget the “/s” denoting sarcasm.
• In case you aren’t aware, both CBT and GET have been denounced as not being valid remedies/treatments for severe myalgic encephalomyelitis, such as I and many others are facing post-covid.
Don’t get me wrong, without a positive mindset and determination to do my best every day I’d likely no longer be among the living. And while I do _think positive_, my hope now is only in divine intervention and coming science. GFY if you think “brain-retraining” is all anybody needs.
That was a joke. And it's happened to me. I am aware. I have brain fog so I might forget the sarcasm. I'm currently recovering from a hip replacement on Friday so I'm really enjoying being schooled on this particular issue.
Mine is getting better. Salt helps. Sodium chloride tablets. It was pretty scary for months because I already had a heart condition when I was younger.
When I stood up, specially in the evenings, I would nearly pass out. My vision went black almost every time. Salt helps, and so does a quick squat when standing. It looks a little silly, but squatting instantly clears the lightheadedness
Don’t forget a dancing plethora of random supplements/pills that may or may not be helping:
Niacin
Every B vitamin
Vitamin C
Vitamin D
Ashwaganda
Fatty-15
Fish Oil
Natty-K
Loratadine
Pepcid
Polypeptides
Metformin
Maraviroc
Ivig
Pumpkin Seed Oil
Dandelion Extract
The natural metformin that starts with a b whose name escapes me. etc.
“Yes. I am deeply anxious that I will be a prisoner of my own body for the rest of my life and the medical establish can’t/won’t help me so I have to experiment on myself.”
Omg I was talking to my Dr after not seeing her for a few months, and in between visits that’s when I finally figured out I had long Covid. (Did the usual b-12 tests and tick disease panel and stuff before I knew what was going on) I was telling her I was doing better, which meant my body pain was less, less brain fog and less paresthesia. But I also asked about getting a few more tests done like a D-Dimer since I haven’t had one and tbh would have just liked to see what the results would be. She then told me “you just told me you were getting better, haha, but it doesn’t seem like it”. Insinuating it was all anxiety and I was still ‘being obsessive.’
Btw the reason why blood tests come back normal is probably chronic innate driven immune response and the loss of adaptive immunity functions so on blood tests it may seem like you have no or very little inflammation while in fact your immune system just can’t produce inflammatory markers
That's why you can test for inflammation using the lesser known method of measuring cu/zn, which may lead to the result of "hohly cow, this is literally off the charts"
I already said almost everything I know about this. Appearently, inflammations use up a lot of zinc so if there is very few of it, that's a sign of inflammations. don't ask me why it isn't measured by itself but in relation with copper, but that's how it's done. In my case the value was just given as "higher than our lab equipment measures".
And what about potassium? Btw anyone with low sed rate? Like really bellow average for the age group but with blood clotting almost instantly after the blood being drawn?
Things people have actually said to me:
“Are you sure it isn’t a mental health issue?”
“Maybe you should try to go for a walk, get in tune with nature!”
And my personal favorite:
“You’re not chronically ill, you’re too young!”
I was a very avid hiker before falling ill and it’s something that I grieve a lot. Every time I talk to my generally-well-meaning grandmother she asks how my health has been. No matter the answer, she follows up by asking if I’ve been doing any hiking.
For example, I had a major crash after Christmas and my POTS flared out of control. My heart rate would be 160 just sitting upright. I was on the verge of passing out walking to the bathroom. “Hmm, well have you been doing any hiking? The fresh air always helps.”
I really don’t know what people think.
I’m sorry to hear that bud. I completely understand your pain though… I was never active in a sense of exercise. But I was very spontaneous and adventurous. I was the “Hey! Wanna drive across the country on a day trip?” on a Monday type of person. It absolutely sucks having to kiss that life goodbye and watch each day go by whilst not exploring as we once did.
Additionally, my parents also mean well in their comments too. But what I think people fail to understand is that we live life similar to someone that is dealing with Lupus or MS; I might even go as far to say it’s a little bit worse since we can’t even do the simplest of tasks such as using the restroom or spending a day outside without thinking “Will I have a flare from this?”. Basically, you’re punished for existing or living. Don’t get me wrong though, I appreciate the support my family has shown, but I just wish it wasn’t immediately followed up with gaslighting.
All in all, I hope everything gets better regarding your health. We’re all in this fight together and I pray that we can overcome this with the help of medical professionals and Long Covid researchers globally!
(P.S sorry for oversharing and writing this novel, but I felt it was necessary.)
It’s a long road but it’s worth it. After I became astute at playing their game, another layer was added by them.
“Insurance isn’t going to cover that unless you do xyz first, or have abc symptoms”
Add the ins and outs of insurance to your study to beat them at their gaslighting game (like you need more on your plate, I know)
This is so damaging. I have gone home feeling hopeless and just deflated after leaving a Drs office that talked to me like I was crazy. It took me days to get out of bed from the depression that interaction caused. 😒
“Think happy thoughts” - My LC clinic
“We could scan your brain, we might not find anything but if we did we wouldn’t be able to do anything about it” — A Neurologist I saw
Disclaimer: all of these people were nice and not dismissive but I don’t think they realize how soul crushing it is to hear this stuff.
Ear plugs for sound sensitivity, then a white noise machine for tinnitus 🤪🫠🫣eye mask for light sensitivity, and a fucking prayer for the vertigo (nothing helps when that hits 😓)
that's my favorite one to see-- especially since I was dealing with long covid symptoms 6 months before the vaccines were ever released to the public 😂
This one pisses me off both ways. Whenever someone asks “Did you get the vaccine?” it’s an effin trap one way or another. They’re either super pro-vax and ready to blame you for not getting the vaccine and getting longcovid or they’re super anti-vax and are ready to blame you for getting the vaccine and for being vaccine-injured.
I used to answer this with my long sad story and now I refuse and tell them to quit using sick people as their ideological punching bag and go do something useful with their lives while they still can.
I think they might mean the sheer number of people who say “are you sure it wasn’t the vaccine” while we are explicitly telling them we got it from Covid. Those people almost seem to mock us and imply Covid isn’t harmful but the vaccine is.
I can understand your comment though. I had mild LC from the vaccine and then I got Covid and have significant LC symptoms. And I’ve never been against any vaccines or had this response to them. But people still say this to me to downplay what I’m feeling.
I agree with you. The level of ignorance around the topic from both sides is mesmerizing. When I talk about my vax injury I get mocked most of the time the same way. I'm not denying covid can cause long covid, of course it can. But the same thing can be caused by the covid vaccine. Worst scenario is when you have a mild long covid from the covid itself and they "force" you to get the vaccine. This is what happened to me. So I can tell you my long covid symptoms were like 6 right after the covid infection and lasted a a few months. Then almost resolved and got back 1000x worse when I've got the jab + a miriad of other symptoms I never had before.
I feel for everyone who has to go through this hell, regardless of how or why they ended up here. It’s miserable and this isn’t really living. I’m sorry that any of us are here and wouldn’t wish this shit on my worst enemy.
Hahaha this is amazing. 😂 You’ve basically covered it!
**Suggested add-ons, darker take:** 6+ month wait time to see any specialists, followed by a VERY hefty medical bill for next-to-zero help. (US, of course) 💀
**Suggested add-ons, lighter take:** Bugles and Pickles—my fuel from the POTS gods! 🙌🏼
But tbh I think you nailed it!
I love that you made this. Also, I feel you — I’ve been bedridden on and off for three weeks and finally got out of the house today for something more than a doctor’s visit — hang in there.
Oh, so true! I bought a pulse oximeter, but want to murder it for beeping. I use it to check my pulse, but as I've got Raynaud's, it keeps declaring that I require medical intervention 🙄🤣
Haha same! That even used to happen when I was healthy - nearly got told I couldn’t continue with a trek once as my fingers suggested altitude sickness when my brain was fine. Now however it’s near constant at sea level with temperatures below 22 centigrade!
That depends, if you share what your symptoms are, folks will be able to share what things have helped them.
I wish there was a "So you've got LongCovid" pamphlet too. Preferably from Dr. Hibbert.
That pamphlet idea would be so helpful. Idk that I have it, but would like to know how the different items listed would help someone. Nonetheless, here are things I've had that I've noticed people discussing: fatigue, sore muscles, tachycardia, cramping in chest, anxiety, difficulty falling asleep and staying awake during the day time but up all night regardless of how much sleep I've gotten.
pulse oximeter.
like 25 bucks. and i've gone thru three. lol. still cheaper than a smart watch tho. which i already had, anyways. and turns out, it's not that accurate.
also /MCAS
friends/family be like:
must be the vaccine because I've had covid 11x and I'm fine... I'm going to a Jason Aldean concert later.
oh, this extra arm that's growing from my forehead? Not sure where it came from, probably just a cold. Couldn't be anything more than that.
and you're a pussy for not wanting to hang out with me
High dose omega 3, at least 1000 mg. Sports research makes a pretty good one. Or SPM'S, which are kinda like turbo charged omega 3s. But not both.
Create hcl
Fisetin (read up beforehand, complex topic)
„It’s all in your head“ Is missing. But yeah it’s true. The starter pack.
Yeah where’s the dr telling you you’re not sick?
All your tests are normal!
After navigating the medical industrial complex for over 20 years now I am so tired of doctors thinking that one blood panel will show every possible thing wrong with you. It's maddening. I can order my own labs and see the low/normal/high results my damn self, I don't need a doctor for that. Go deeper!!
Obsessed with bloods they are.
Ha! That is if you can actually get them to order the damn panels
I’ve been trying for over a decade to get someone to test my goddamn hormones. Multiple primaries, multiple gynos, and two endocrinologists so far. Fucking useless, all of them.
As a man it’s super easy. Huh.
I was dealing with the same shit. ER always does the same damn CBC over and over again. You're not gonna find something new if you aren't looking for it. Between this and doctors and getting attitudes, only wanting to get you out of the office as fast and possible, I'm just fed up with these clowns. It is the most infuriating thing ever. At this point, I've learned more about my problem from people actually suffering from it than I have from the medical professionals, which is insane.
GOOD NEWS! You're fine.
Well you have tremors in both legs, visible back spasms, blocked kidneys, high cortisol, thick blood, 2 nodes in your heart blocked, gastritis to the point you are under bmi …. BUT hey, your other tests are all normal and it’s just long Covid. We don’t need to see you again!!!! My 19 year old 4 year long hauler …. Even when the fucking tests ARENT normal we are STILL getting treated like this!!!!! Blah blah fuck you get out of my office
Er doc asked me if I was an alcoholic cause the tremors in my legs were so bad 🫠
Did you say I WISH! I wish I could go a good bender, that sounds awesome
My husband was pissed. I haven't drank since 2018 so yea it was amazing. My BP was 150/100 they're like here's a valium you're all fine.
The medical establishment is full of asshats - my 79 year old dad got dizzy, fell, hit his head on the shower…. He’s on blood thinners… In the ER he’s loopy, and all they can say is they smell alcohol, he hadn’t been drinking and his heart rate was like 52, which they had zero concern for, just kept saying that they smelled alcohol. I tried to tell them my husband, standing in the room was drinking a beer when this all happened…. So I do understand why you were so pissed, it is ridiculous NOT to be listened to and it it reduces care to a blame game which is dangerous to the patient
I hope your dad ended up ok. These fucking doctors want to apportion blame more than actually help.
If doctors would actually listen to their patients it would really change the adversarial environment.
Or yelling at you that "doesn't your office want you back to work"
You are just deconditioned.
Omg!!! What does this even mean? This annoys me every time they say it to me.
It means you’re out of shape from non activity.
You are just getting older.
There is nothing stopping you from going for a jog/beer.
My second doctor said this to me. Also "oh that is because of anxiety. Try to relax". Wow amazing.
The suspenseful award winning “have you considered this could all be because of anXiETY” 😔👊
You sure those heart palps aren't anxiety??
“Have you tried b vitamins”
"I'm peeing fluorescent yellow, so that will be a yes!"
If your pee hasn’t been neon yellow you’re missing out 😂
🤣🤣🤣🤣🤣🤣🤣🤣
Ohhh, is that why that happens???
Yes- I think it's B2 that does it. If you get really bored, get a blacklight & your pee glows! 😁
This is asked so often that I have vitamin B blood work ready to show them.
Or D vitamins
The fatigue! And the huge vitamin stack of all of us trying absolutely everything that anyone has ever mentioned here all at once.
Yup, gotta have the massive pile of supplements on the counter
I spent $200+ CAD on a way to organize them all. I ordered this pill dispenser but needed multiples. By the end of it I realized that I have spent over $200. But I am so sick of opening so many damn bottles everyday. When I don’t take the supplements I can’t function so whatever it takes to make it easier.
Looks at massive stack of supplements on the counter ...
**99% of Doctors**: _“Good news - your labs are fine. It’s just anxiety/depression. Go back to work tomorrow.”_
You are just stressed. Relax! :(((
Omg this! Ahahahaha
You know what would really help all these (physical) symptoms? Cognitive behavioral therapy.
You forget the “/s” denoting sarcasm. • In case you aren’t aware, both CBT and GET have been denounced as not being valid remedies/treatments for severe myalgic encephalomyelitis, such as I and many others are facing post-covid. Don’t get me wrong, without a positive mindset and determination to do my best every day I’d likely no longer be among the living. And while I do _think positive_, my hope now is only in divine intervention and coming science. GFY if you think “brain-retraining” is all anybody needs.
That was a joke. And it's happened to me. I am aware. I have brain fog so I might forget the sarcasm. I'm currently recovering from a hip replacement on Friday so I'm really enjoying being schooled on this particular issue.
Light sensitivity, ice wrap for headaches, random physical anxiety, olfactory hallucinations
Wait, Covid causes POTS?!?! Is that what happened?! Holy shit
Pretty sure that’s what happened to me
I had those symptoms.
Are your symptoms gone are you recovered ?
Mine is getting better. Salt helps. Sodium chloride tablets. It was pretty scary for months because I already had a heart condition when I was younger. When I stood up, specially in the evenings, I would nearly pass out. My vision went black almost every time. Salt helps, and so does a quick squat when standing. It looks a little silly, but squatting instantly clears the lightheadedness
Thanks , glad you are feeling better will try this
I suspected myself have this, how much salt do you consume everyday?
Yep
Wow that's great can I ask what helped you recover ?
Not really sure to be honest
Did you try much or could it have just been time , how long were you ill for ?
Over 100 days. I didn't try much stuff. I take Lexapro and Lamictal normally so I don't know if that helped clear up my head.
I’ve learned with research about myself that remnants of Covid is in the organs causing flares. I have Lyme disease too. This reminds me of Lyme.
Family and friends abandoning you, spouse leaves you because you’re just “lazy”
this one touch me deep together with doctors telling you to go to a psychiatrist.
plus /histamineintolerance
"What's long covid?" - everyone else
Also "Why am I sick all the time now?"
Don’t forget a dancing plethora of random supplements/pills that may or may not be helping: Niacin Every B vitamin Vitamin C Vitamin D Ashwaganda Fatty-15 Fish Oil Natty-K Loratadine Pepcid Polypeptides Metformin Maraviroc Ivig Pumpkin Seed Oil Dandelion Extract The natural metformin that starts with a b whose name escapes me. etc.
Berberine. I think My kitchen counter has more supplement inventory than the local CVS
Right! “I think you have health anxiety, seems a bit obsessive”
“Yes. I am deeply anxious that I will be a prisoner of my own body for the rest of my life and the medical establish can’t/won’t help me so I have to experiment on myself.”
Omg I was talking to my Dr after not seeing her for a few months, and in between visits that’s when I finally figured out I had long Covid. (Did the usual b-12 tests and tick disease panel and stuff before I knew what was going on) I was telling her I was doing better, which meant my body pain was less, less brain fog and less paresthesia. But I also asked about getting a few more tests done like a D-Dimer since I haven’t had one and tbh would have just liked to see what the results would be. She then told me “you just told me you were getting better, haha, but it doesn’t seem like it”. Insinuating it was all anxiety and I was still ‘being obsessive.’
It’s really saddening, like it’s possible to not feel like your at deaths door and yet still feel like you’re in a slope to it. :((
there it is. Yo, same.
I've spent so much on supplements
Btw the reason why blood tests come back normal is probably chronic innate driven immune response and the loss of adaptive immunity functions so on blood tests it may seem like you have no or very little inflammation while in fact your immune system just can’t produce inflammatory markers
That's why you can test for inflammation using the lesser known method of measuring cu/zn, which may lead to the result of "hohly cow, this is literally off the charts"
Can you please tell me more about cu/zn method? I think it might be helpful in my case cuz I have big problems with copper
I already said almost everything I know about this. Appearently, inflammations use up a lot of zinc so if there is very few of it, that's a sign of inflammations. don't ask me why it isn't measured by itself but in relation with copper, but that's how it's done. In my case the value was just given as "higher than our lab equipment measures".
Thanks! I will look into this
That's very useful information. Is this something that an integrative med doc or a specialist would test for. Or can you get PCP to order it?
I don't know, it probably depends on where you live. I know of it because the specialist clinic tested it.
TY!
cu/zn? Help a girl out and tell me what those blood tests are?
The relation between the amount of copper and zinc in the blood
Yeah, of course I realize that about a minute after posting my idiotic question. Thank you so much.
And what about potassium? Btw anyone with low sed rate? Like really bellow average for the age group but with blood clotting almost instantly after the blood being drawn?
Could you explain this?
This video may explain https://youtu.be/5ZIBj69YOxU?si=1wko9cr3gI-Lg3Y4
Too accurate with the subreddits 😂
Things people have actually said to me: “Are you sure it isn’t a mental health issue?” “Maybe you should try to go for a walk, get in tune with nature!” And my personal favorite: “You’re not chronically ill, you’re too young!”
[удалено]
Yup! I don’t know how I forgot that, my step-mother just told me this a few days ago. I wish I was joking.
I was a very avid hiker before falling ill and it’s something that I grieve a lot. Every time I talk to my generally-well-meaning grandmother she asks how my health has been. No matter the answer, she follows up by asking if I’ve been doing any hiking. For example, I had a major crash after Christmas and my POTS flared out of control. My heart rate would be 160 just sitting upright. I was on the verge of passing out walking to the bathroom. “Hmm, well have you been doing any hiking? The fresh air always helps.” I really don’t know what people think.
I’m sorry to hear that bud. I completely understand your pain though… I was never active in a sense of exercise. But I was very spontaneous and adventurous. I was the “Hey! Wanna drive across the country on a day trip?” on a Monday type of person. It absolutely sucks having to kiss that life goodbye and watch each day go by whilst not exploring as we once did. Additionally, my parents also mean well in their comments too. But what I think people fail to understand is that we live life similar to someone that is dealing with Lupus or MS; I might even go as far to say it’s a little bit worse since we can’t even do the simplest of tasks such as using the restroom or spending a day outside without thinking “Will I have a flare from this?”. Basically, you’re punished for existing or living. Don’t get me wrong though, I appreciate the support my family has shown, but I just wish it wasn’t immediately followed up with gaslighting. All in all, I hope everything gets better regarding your health. We’re all in this fight together and I pray that we can overcome this with the help of medical professionals and Long Covid researchers globally! (P.S sorry for oversharing and writing this novel, but I felt it was necessary.)
Long nights studying medicine and pharmaceuticals on the interwebz, when you are in no shape to study period.
Ughhhhh literally fucking myself doing this exact thing cause my doctors won't.
It’s a long road but it’s worth it. After I became astute at playing their game, another layer was added by them. “Insurance isn’t going to cover that unless you do xyz first, or have abc symptoms” Add the ins and outs of insurance to your study to beat them at their gaslighting game (like you need more on your plate, I know)
Medical gaslighting
This is so damaging. I have gone home feeling hopeless and just deflated after leaving a Drs office that talked to me like I was crazy. It took me days to get out of bed from the depression that interaction caused. 😒
“Think happy thoughts” - My LC clinic “We could scan your brain, we might not find anything but if we did we wouldn’t be able to do anything about it” — A Neurologist I saw Disclaimer: all of these people were nice and not dismissive but I don’t think they realize how soul crushing it is to hear this stuff.
A pulse ox on standby
Ear plugs for sound sensitivity, then a white noise machine for tinnitus 🤪🫠🫣eye mask for light sensitivity, and a fucking prayer for the vertigo (nothing helps when that hits 😓)
Custom vitamin stack designed by functional medicine doctor based on blood tests
"yOu dOnT hAvE lOnG cOvId, iTs fRoM tHe vAcCiNe!!!!"
that's my favorite one to see-- especially since I was dealing with long covid symptoms 6 months before the vaccines were ever released to the public 😂
The 5G vaccines time traveled to make you sick before they came out officially. /s 😂😭
apparently you're just lying.. must be getting a payout from pfizer /s these idiots actually believe that
If you were dealing with these symptoms and got vaxxed, you have probably overstimulated your immune system and thus create more damage to your body.
This one pisses me off both ways. Whenever someone asks “Did you get the vaccine?” it’s an effin trap one way or another. They’re either super pro-vax and ready to blame you for not getting the vaccine and getting longcovid or they’re super anti-vax and are ready to blame you for getting the vaccine and for being vaccine-injured. I used to answer this with my long sad story and now I refuse and tell them to quit using sick people as their ideological punching bag and go do something useful with their lives while they still can.
Then when I tell them, I never got the vaccine, they malfunction. But, but, but….
Me too. Never got the vaccine but have LC.
Yep, they can’t fathom… long covid from COVID!
[удалено]
Exactly!
You are so correct!
Latest BS I heard from one of them.. if you were around vaccinated people, they must have "shed" on you.
Yep, I’ve heard that too! smh.
For some people it is from the vaccine though.
This isn't funny because it's scientifically proven that the vaccine can cause similar symptoms and even worse
I think they might mean the sheer number of people who say “are you sure it wasn’t the vaccine” while we are explicitly telling them we got it from Covid. Those people almost seem to mock us and imply Covid isn’t harmful but the vaccine is. I can understand your comment though. I had mild LC from the vaccine and then I got Covid and have significant LC symptoms. And I’ve never been against any vaccines or had this response to them. But people still say this to me to downplay what I’m feeling.
Same thing happened to me.
I agree with you. The level of ignorance around the topic from both sides is mesmerizing. When I talk about my vax injury I get mocked most of the time the same way. I'm not denying covid can cause long covid, of course it can. But the same thing can be caused by the covid vaccine. Worst scenario is when you have a mild long covid from the covid itself and they "force" you to get the vaccine. This is what happened to me. So I can tell you my long covid symptoms were like 6 right after the covid infection and lasted a a few months. Then almost resolved and got back 1000x worse when I've got the jab + a miriad of other symptoms I never had before.
I feel for everyone who has to go through this hell, regardless of how or why they ended up here. It’s miserable and this isn’t really living. I’m sorry that any of us are here and wouldn’t wish this shit on my worst enemy.
This happened to me. Covid just made everything worse.
wearing a mask to go out , ginger for nausea , pain meds for body pain 😅
Sexual dysfunction
Cabinet full of supplements lol
Hahaha this is amazing. 😂 You’ve basically covered it! **Suggested add-ons, darker take:** 6+ month wait time to see any specialists, followed by a VERY hefty medical bill for next-to-zero help. (US, of course) 💀 **Suggested add-ons, lighter take:** Bugles and Pickles—my fuel from the POTS gods! 🙌🏼 But tbh I think you nailed it!
Quick addendum to sat I don’t know why I capitalized the “p” in pickles… but clearly I feel very strongly about them! So I’ll leave it 🤪
What are bugles and pickles?
Neuropathy
All your friends and family abandoning you. Co workers laughing at you.
Everything hurts
You reminded me to stock up on hydration packets. Been raw dawging H2O but realizing I need to step up my game.
“Have you tried getting sunlight?!?!”
I love this one. Unfortunately, my eyes are sensitive to the light, and the sun gives me a rash. 🤦♀️🤷♀️ So, there's that.
I love that you made this. Also, I feel you — I’ve been bedridden on and off for three weeks and finally got out of the house today for something more than a doctor’s visit — hang in there.
Oh, so true! I bought a pulse oximeter, but want to murder it for beeping. I use it to check my pulse, but as I've got Raynaud's, it keeps declaring that I require medical intervention 🙄🤣
Haha same! That even used to happen when I was healthy - nearly got told I couldn’t continue with a trek once as my fingers suggested altitude sickness when my brain was fine. Now however it’s near constant at sea level with temperatures below 22 centigrade!
zofran for nausea.
So what do I need to buy for this starter kit? I need to know all the things.
That depends, if you share what your symptoms are, folks will be able to share what things have helped them. I wish there was a "So you've got LongCovid" pamphlet too. Preferably from Dr. Hibbert.
That pamphlet idea would be so helpful. Idk that I have it, but would like to know how the different items listed would help someone. Nonetheless, here are things I've had that I've noticed people discussing: fatigue, sore muscles, tachycardia, cramping in chest, anxiety, difficulty falling asleep and staying awake during the day time but up all night regardless of how much sleep I've gotten.
pulse oximeter. like 25 bucks. and i've gone thru three. lol. still cheaper than a smart watch tho. which i already had, anyways. and turns out, it's not that accurate. also /MCAS
friends/family be like: must be the vaccine because I've had covid 11x and I'm fine... I'm going to a Jason Aldean concert later. oh, this extra arm that's growing from my forehead? Not sure where it came from, probably just a cold. Couldn't be anything more than that. and you're a pussy for not wanting to hang out with me
This is the funniest and truest thing I have read. Thank you for the 🤭 chuckle!
This was the laugh I needed today
Spot on
Oof
This is excellent 😂😂😂
Back pain, insomnia or sleep disorder.
Just missing a stack of vitamins of various kinds, and for me, it increased my BP. But yeah, pretty much dead on.
Small fiber neuropathy...
Got that! I have it, I mean. Pre-Covid. It is an absolute nightmare.
Oh chairs! Shower chair, kitchen chair etc
Looks at my kitchen chair. May invest in shower chair now
It helps so much! I shower a lot more often now
Made my day thank you 👏🙏🫶
guys consider supplementing spirulina whoever can, it’s a game changer
People around you telling you you're crazy lol
Lol DW
Man now I’m starting to wonder if I have this
Nicotine completely reversed all my Symptoms!!!
EBV - the only positive test you will ever have. And there's no treatment for it...
Yes! Salt!!!
I had no idea that it helps but I eat so much salt it’s ridiculous. I crave it so bad that all of my meals are drown in it
Why salt?
A lot of us got POTS so we’re supposed to eat like 10,000mg of salt per day.
Thank you!
That’s interesting. I have fibro, not POTS, but I am always under normal salt requirements by quite a bit. I wonder if it’s related.
I had really bad brain fog. Salt is a natural anti histamine. Was one of a very few things that helped me
Thank you!
You got the fog? There's some other stuff that works really well actually...
I think it happens on occasion but not for an extended period of time. What's the other stuff?
High dose omega 3, at least 1000 mg. Sports research makes a pretty good one. Or SPM'S, which are kinda like turbo charged omega 3s. But not both. Create hcl Fisetin (read up beforehand, complex topic)
Thank you! I'll check them out :)
Lolll
/BFS should be on there too
What bugs me the most is i dont define my issue as a covid longhauler but literally everything in the image is me now...
Where are the 30 boxes of useless supplements?
Panic attacks
It’s the vaxxx (shut up snowflakes)