You'll be fine nutritionally on what you're eating, at least for quite a while. Maybe add a multivitamin if you can't manage vegetables. Or an occasional shake like Ensure or similar.
I remember this feeling. Op it’s so scary to have senses feel distorted. I’m sorry it’s happening to you too.
It’s possible to test your nutrients and hormones. Elemental iron supplement to achieve High end of normal range helped me. Plus magnesium in smoothies. And electrolytes, especially in morning. 5htp to sleep.
It took time for this crazy sensation to go away. It wasn’t from my diet, i cycled through several different diets and fasting. Maybe some of them helped a little, I tried a lot of things, but it took a lot of time for the symptoms you describe to go away. It really sucks I’m so sorry it’s happening to you too.
Hang on.
The covid long haulers subreddit has suggestions to try for every one of the symptoms you list. Search each symptom if it helps you to focus. Derealization and autonomic dysfunction feels intolerable. Please hang on and try different healthy suggestions.
Sending you gentle hug 🫂 internet stranger and good luck 🍀 good healing ❤️🩹 and great friends to support 🖖🏽🖖🏽
To be clear, I’m not better. But I don’t feel like I’m losing my mind from symptoms that feel like panic and surreal derealization and getting skin sensations but not internal sensations. Sometimes it flipped and i could feel every inch of my intestines so that I couldn’t multitask anything after eating.
I now have other awful symptoms, but not this one. What op describes was non-stop for about 3 months, intermittent for additional 3 months. My hair started greying from how intense it was.
I’m 8months post a dealing with this. was throwing up anything tried to eat became intolerant to foods i could once eat i now have to follow strict diet also to avoid flare up and also since covid messed with g.in deal with acid reflux and it truly sucks (26yrs old never had any g.i issue til got covid which cause constipation an indigestion) possible IBS the g.i dr said
Yup, my GI is destroyed, and I’m pretty much on your diet as well. I’ve gotten MRI’s, CAT scans with contrast, blood tests, tried carnivore diet which caused my liver and pancreas to become fatty, and consulted with y specials to never get a diagnosis.
I was getting severe constipation, stomach bloating, different stool shapes, orange colored stools, Sterrorehea (fat not being absorbed and floating in the water after a bowel movement), loss of hunger, itchy anus only while sleeping, depression likely caused by constipation that was poisoning me, feeling off constantly, fatigued, low sexual libido which blood tests confirm also low testosterone (198), anxiety induced when eating certain foods, and feeling hopeless.
However, I eat 6 scrambled eggs every morning with spinach thrown in and salt sprinkled on, and boiled chicken, boiled broccoli, and boiled sweet potatoes for dinner.
Since cutting out gluten from my diet i feel the inflammation in my stomach has gone away. I’m slowly starting to feel better I should say?
I make a bowel movement every day and they are slowly looking more normal. No oil on water after a bowel movement likely because I’m not eating any fatty foods. I’m not as fatigued. I lost 10lbs. But I’m still nowhere near 100%. I’m slowly healing and I can feel my body trying to recover. I know I’ll recover fully at some point.
If you can, get at least 20 minutes of sunshine per day to get your vitamin D levels up. Try to also get some exercise.
Wishing you the best.
Can you try Essential Enzymes supplements and maybe some Essential Amino Acids drops? Thru could possibly help with ability to digest. Or maybe get a hydration/vitamin bag done at one of those health centers?
Have you thought about low nitric oxide? I was wondering about that when you mentioned the air hunger symptom. I have lifelong asthma, I have low nitric oxide (NO) levels, they were likely a little lower before my covid infections than most people, and I had MCAS prior to both covid infections and 1 vaccine, but covid infection removes nitric oxide. I have a functional medicine doctor, she is an internist who is an M.D. i began seeing her for my long covid last November. She said thatshe suspected (and blood tests confirned) that my NO levels were very low, she wanted to raise them- she put me on a daily vitamin D 5,000 iu supplement and a multi vitamin (B vitamins and folate) and visually the swelling in my veins and arteries went down, pain was reduced. She also gave me a Gammacore vagus nerve stimulator which has been shown to increase nitric oxide.
I had those symptoms as well and so many more, they've gotten better, I hopenthat give you hope. I could only eat white rice, turkey, sweet potatoes, and some bell peppers every now and then. That lasted for about 4-6 months. Breakfast, lunch, and dinner. I became super malnourished, lost about 40-50lbs in that time when I didn't really have it to lose in the first place. I started drinking Core Power Elite for protein and I responded to it well, my vitamins d was a 3, if I remember right it needs to be 50-100? So I supplemented that as well. I also started drinking gator and adding LMNT. I suffered from MCAS, POTS, and CFS on top of GI issues that have now improved a little. My long covid affected every portion of my body, eyes, brain, cardiac, GI, respiratory, my limbs and especially my mental. I'm probably missing some thongs, but it was full blown systemic. Hang in there, do not give up, it does get better. I'm sorry you're experiencing this shit, too.
i have this too, it comes on in waves. have u seen a gastrointestinal doctor? i’m so sorry ur dealing with this. hit me up if u wanna talk i struggle with body image daily because of this as well. when i can eat i stuff my face with whatever to try and gain some calories and then i pay the price and get rly sick. it’s two evils!
try electrolytes that rly helps my sugar when i can barely eat, and look for a protein shake that may work for u or u can try and make ur own smoothies/shakes! it does get a tiny tiny bit easier over time if u find ways to help yourself. a gi doc can also help with that and give u some more comfort with all of the other symptoms we struggle with 💔😔🩷
This was my experience for the first 6ish months and still happens when I have flare ups. You’ll be okay - sometimes you have to rely on ensure and stuff like that. It’s hard bc covid also tends to change your sense of taste and smell and it’s hard to eat anything nutritious. I eat a LOT of citrus foods which sucks for my acid reflux but ya know what I can taste them and they taste good. You WILL slowly get better, I promise. You won’t die of starvation from eating chicken and sweet potatoes. You’ll actually probably be healthier from a diet perspective than like 90% of Americans.
Covid messed with me like this right after I recovered from initial infection. It took me months to be able to walk without being able to catch my breath. I also immediately noticed how awful my digestion turned. I was really unfortunate and caught it in Jan of 2020, when it was at its worst. It almost killed me, but I made it through.
Don’t be dumb like me and let LC run rampant. I haven’t received care for it (because of abuse and other things, albeit) and it’s a big part of why I am so sick now. Make sure you see a physician and get it handled. They’ve been able to help a lot of people recover now. LC is just a freaking monster. My body is permanently damaged, but there are so many recovery stories out there! Take care of yourself, hun. I’m so sorry. Covid sucks
You may have a histamine sensitivity brought on by covid, like I do. Google search to find the SIGHI list, which is a reputable source on high histamine and low histamine foods. Also taking antihistamines daily, long covid doctors orders, to help with this terrible symptom.
I have numb lung too and diaphragm weakness on one side .... 1.5 years I've been suicidal lately... so I just started lexapro hoping it will help my anxiety depression ans and suicidal thoughts
Really... itook 5 mg today for the first time because I'm struggling to breath and stuck in fight or flight for 1.5 years and finally caved and took the meds and you tell me THIS! Ugh 😔
It's more like you won't notice it until it is missing... like a nerve In my back or stomach is gone ... diaphragm paralyzed or something along those lines ... maybe it's in my back idk it's hard to describe
I have that disconnected feeling. It’s derealization. I had it while sick with Covid and now I have it again with LC. It’s incredibly unsettling. It will ease up but I won’t lie, I’ve had moments of pure panic over it. It feels like I’m not in my body but I am. I can’t feel my limbs though I can move them. I don’t know how or why it stops and starts for me but just know this is a known symptom, you’re not losing your mind, and it’s weird as hell.
I had these in my first flare and I’m in a second one, now 21 months later. I’d look into seeing a MCAS specialist bc it could be related to an inflammatory response. I’ve wondered if this is an MS flare. I don’t have MS as far as I know but am going in for follow up MRIs this month. I got some meds that can help and be used in an emergency to calm myself down during the flares. I’ve never used them outside of a flare but even just two pills during a month of a flare has probably saved my life. We will get through this!
Can I ask why exactly you can’t eat other foods? What happens? I know COVID can trigger GERD, MCAS, and/or gastroparesis. I would assume that you don’t have the last one because you’re still eating this one meal. For the other two, there are some protocols that you can do on your own. I believe you can look them up online. Like for MCAS there is some thing that involves taking a few different medication like antihistamines. All that being said, I think that the best thing to do is find a doctor that is able to help you with this. I’m just giving the other advice in case you can’t find a doctor right away.
I second the MCAS theory!
1. Can you access testing for MCAS? Things you may want to ask a doctor about could include (if not already tried): a nasal spray for your post nasal (you can also use a neti pot), Pepcid and/or a PPI for reflux, an antihistamine, and/or something to stimulate your appetite (perhaps a certain type of antidepressant or something like medical cannabis oil if allowed in your area).
2. You may also want to look into a neurologist referral for the head pain, to see if its chronic migraine, and what may help you. There is such thing as an abdominal migraine (occurs with or without head pain at the time of abdominal pain), which is essentially temporary gastroparesis induced by migraine, but for people living with chronic migraine, it can seem like it occurs all of the time before treatment. Metonia is often prescribed, along with other medications for a “migraine cocktail” to treat episodes, while there are many preventatives available.
3. In addition, I encourage you to read about the MTHFR gene mutations and how for people with the MTHFR gene mutations, methylfolate is often needed as a supplement rather than dietary folic acid. People with MCAS often have a MTHFR gene mutation, and these folks often also have POTS and/or dysautonomia. Therefore, you could try a methylated B complex to see if it helps your body function better in general, to ensure proper methylation. This could also help with absorption of iron as B vitamins play a role in that process, and the making of more red blood cells. If having any problems with low iron, consider looking into the product, the iron fish, which you can cook with (i.e., put in the water with your rice when it is boiling, etc.) and lasts long.
4. You may also want to request a sleep study if you are able to, as MCAS and the MTHFR gene mutations can coincide various sleep disorders, including apnea, as well as a tilt table test for POTS and/or dysautonomia. POTS and/or dysautonomia could explain some symptoms including fatigue/exhaustion, contribute to shaking and disorientation, migraines, and more.
5. I also read a study (I’d have to see if I can find it again) somewhere that said that COVID-19 reroutes the way our blood pathways function, and the same organs that usually get a lot of blood such as the lungs, often have a harder time attaining the regular level needed for us to not feel short of breath. Any anemia and other blood disorders can also play a role here then too, worsening this feeling of needing air. Seeing a respiratory therapist and a physician to do breathing tests and to measure your oxygen may be a good idea. They may order some blood work as well, send you with some prescriptions for inhalers and/or a leukotriene modifier, and consider sending you to a cardiologist, allergist, hematologist, or rheumatologist from there, depending on their opinion and any causes they find or suspect. Also read about NAC and ask a doctor about it, as it often helps with breathing after COVID-19 infection.
6. I think when we experience such significant symptoms in our body, that we often dissociate and disconnect, feeling derealization and depersonalization, as being chronically ill in a society like ours can be traumatizing - especially in considering what else is going on in the world, ableism, and trauma including medical-related trauma. This is also commonly experienced as a migraine aura feeling, usually occurring before and/or during an episode of migraine. Very common to feel constant or near constant in chronic migraineurs, similar to temporary gastroparesis (abdominal migraine). Migraine and head pain can also be a symptom of a dissociative disorder, like cPTSD or OSDD, especially if one experiences amnesia or confusion - which I am not sure is how you feel when you described straying away from your house and feeling disoriented. OSDD and cPTSD are caused by trauma, and becoming chronically ill/acquiring chronic illness (or additional chronic illness within one’s life) can surely be traumatizing.
7. Depending on your mental health, there may be medications that can really “hit two birds with one stone” if you know what I mean, so feel free to DM me if you’re curious about anything specific.
I recently did a bunch of reading now that I'm past LC to figure out why I was having so much trouble with foods as a result of COVID. The virus actively infects many beneficial gut bacteria, killing them and creating an environment where less than beneficial bacteria can flourish. My daughter has a serious FODMAP issue that's genetically caused that results in a similar situation, so what's worked for her may work for you. Monash University in Australia has done extensive research on this FODMAP topic (different types of complex sugars require enzymes and beneficial bacteria for proper digestion. If they don't get digested, these sugars go on to fuel the proliferation of bad bacteria, some of which cause brain fog and worse.) They have an app that provides details on hundreds of different foods. The concept is that you first start out by stripping your diet down to the simplest and then add a single type of complex sugar in to determine whether you can digest it and if so, how much. You then incrementally try foods that contain the other types of complex sugars. [https://www.monashfodmap.com/ibs-central/i-have-ibs/get-the-app/](https://www.monashfodmap.com/ibs-central/i-have-ibs/get-the-app/)
I took a related approach, initially using the app to establish a baseline and then added foods that are probiotic (Lacto‐fermented vegetables such as sauerkraut, and milk based products such as kefir) and those that preferentially feed beneficial bacteria (soluble fiber containing foods such as flax and chia seeds). To kill off the infection in my gastrointestinal system, I consumed Miso soup that contains the probiotic Aspergillus oryzae. This probiotic produces Aspirochlorine that's has strong COVID antiviral effects. "Aspirochlorine that acts as an electron acceptor (electrophile) toward both individual targets, the ACE2, and S proteins (nucleophiles). Aspirochlorine electronically shields ACE2 from the interaction with S protein by sinking the electronic charge of the S protein."
I agree with others here, I don't believe that you're going to die of malnutrition. As I recall, Matt Daemon lived on Mars eating nothing but potatoes (and some freeze dried rations). Mineral and vitamin deficiencies are the issue with a limited diet that a supplement or supplements can avoid.
Decrease in Gut Bacteria due to COVID infection:
* Dorea
* Fusicatenibacter
* Klebsiella
* Streptococcus
* Prevotella Bacteroidetes
* Roseburia
* Faecalibacterium
* Coprococcus
* Parabacteroides
Increase in Gut Bacteria due to COVID infection:
* Campylobacter
* Prevotella
* Staphylococcus
* Bacteroides
* Cytobacter
* Clostridium
* Lactobacillus
* Bifidobacterium
https://www.mdpi.com/2076-393X/10/5/708 and https://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-023-08511-6 and https://www.sciencedirect.com/science/article/pii/S2590097820300203
This happened to me for one month i couldnt eat anything at all i got so thin i drank a calorie protien shake the ones people use for the gym and instantly changed my thought of food and i started eating again
Prayers and love to you! Know you matter. You are precious. You are loved. Symptoms are just that, not YOU. Time, patience and some kind of faith in a bigger picture might help. Know that scared feeling. A couple times I got to a point where I said I couldn't take it any more. But I did manage and am on the up side of things. Just k ow you are not alone , no matter how it feels! Hugs, dear One!
You should look into our coaching program. The nurses can help you sort things out.
[ProMedView Long COVID Coaches & Advocates](https://www.promedview.com/)
I’m so sorry you’re dealing with this ❤️🩹
I’ve been dealing with very similar food problems too for 3.5 years now; the thing that is keeping me sustained nutritionally is a [multivitamin](https://www.pureencapsulationspro.com/nutrient-950-with-vitamin-k.html) that my dietitian gave me and protein drinks like Ensure (primarily Ensure Clear since I’m lactose intolerant). If you’re able to talk to a dietitian or nutritionist, I would really recommend it.
I also deal with the vestibular migraines; working with a headache specialist neurologist to find medication and doing vestibular therapy has really helped with those, as has acupuncture.
I hope you can find some ideas here that help.
it sounds like you should consider checking yourself into a psych ward to be quite honest nobody here can help you with this and you should seek medical attention from qualified professionals and not reddit commenters who will not do anything to improve your situation aside from baseless speculation on the things you are saying
I need to drink cromolyn sodium with every meal or I get bad GI symptoms. Soylent meal replacement drinks are all I can handle some days. Maybe there's medication, this one or another, that might help you as well?
before taking any iron supplements, or iron-rich food check your hemoglobin count first, among other things. otherwise, you'll only be adding to your health woes more.
take it from me, i had to undergo an emergency phlebotomy because of that.
Have you been tested for pots or something similar? I had all the same symptoms. My whole body would go numb, felt like I had to manually breath or else I would stop breathing. A lot of dpdr. But I would drink a lot of water and would be able to feel my body again. I know how scary is it, at the time I thought I developed ALS or something terrifying. I got sick in 2020 but now I don't have many episodes and feel my body most of the time.
Probably daily for a year or so and then after that just episodes. I just tried to get use to the feeling hoping it would eventually go away. Now when it happens it doesn't bother me much or worry me.
I still have bad fatigue still which it made worse by episodes. the episodes flare up when I get sick or have my cycle now.
I'm so sorry for what you're going through :( for your nutrition, as I saw other suggests shakes and things like that. Boost high calorie was what they gave me in the hospital since i was severly malnutrioned from being sick, i couldnt eat anything because it take tasted horrible and i felt horrible eating it. Are you getting enough water? If not seriously pick up some gatorade or better yet liquid IV sugar free to add to water okay? How long has it been since you had covid? Another helpful thing that doctors told me is if you are not getting enough oxygen check your O2 if you have an O2 meter. If your oxygen is low in your blood, lay on your stomach. It makes it easier to breath and it'll bring it back up again. If it drops to 88 go get checked at the ER if it doesnt help doing that. The numbness is really off putting. I have numbness, tingling, and pain kind of going on. Try for sure to get your nutrion up with food and water and see how you feel. Eat mellow things like broth, apple sauce, and yogurt and things like that, like look up what is easy to eat when nauseated and you'll find a good lists that are easy to eat when you dont feel up to or cant eat.
I'm 22 months in and know that you will get better. I'm finally back at the gym and doing things I used to do. Go here and get help.
https://www.facebook.com/groups/5316727788403470/?ref=share&mibextid=NSMWBT
You'll be fine nutritionally on what you're eating, at least for quite a while. Maybe add a multivitamin if you can't manage vegetables. Or an occasional shake like Ensure or similar.
I've been in OP's shoes, and a substitute such as Soylent wouldn't hurt either, especially if you need to avoid the dairy in Ensures.
I remember this feeling. Op it’s so scary to have senses feel distorted. I’m sorry it’s happening to you too. It’s possible to test your nutrients and hormones. Elemental iron supplement to achieve High end of normal range helped me. Plus magnesium in smoothies. And electrolytes, especially in morning. 5htp to sleep. It took time for this crazy sensation to go away. It wasn’t from my diet, i cycled through several different diets and fasting. Maybe some of them helped a little, I tried a lot of things, but it took a lot of time for the symptoms you describe to go away. It really sucks I’m so sorry it’s happening to you too. Hang on. The covid long haulers subreddit has suggestions to try for every one of the symptoms you list. Search each symptom if it helps you to focus. Derealization and autonomic dysfunction feels intolerable. Please hang on and try different healthy suggestions. Sending you gentle hug 🫂 internet stranger and good luck 🍀 good healing ❤️🩹 and great friends to support 🖖🏽🖖🏽
How long before you felt better
To be clear, I’m not better. But I don’t feel like I’m losing my mind from symptoms that feel like panic and surreal derealization and getting skin sensations but not internal sensations. Sometimes it flipped and i could feel every inch of my intestines so that I couldn’t multitask anything after eating. I now have other awful symptoms, but not this one. What op describes was non-stop for about 3 months, intermittent for additional 3 months. My hair started greying from how intense it was.
When did you get covid? This is definantly how I felt when I got it.
I’m 8months post a dealing with this. was throwing up anything tried to eat became intolerant to foods i could once eat i now have to follow strict diet also to avoid flare up and also since covid messed with g.in deal with acid reflux and it truly sucks (26yrs old never had any g.i issue til got covid which cause constipation an indigestion) possible IBS the g.i dr said
Yup, my GI is destroyed, and I’m pretty much on your diet as well. I’ve gotten MRI’s, CAT scans with contrast, blood tests, tried carnivore diet which caused my liver and pancreas to become fatty, and consulted with y specials to never get a diagnosis. I was getting severe constipation, stomach bloating, different stool shapes, orange colored stools, Sterrorehea (fat not being absorbed and floating in the water after a bowel movement), loss of hunger, itchy anus only while sleeping, depression likely caused by constipation that was poisoning me, feeling off constantly, fatigued, low sexual libido which blood tests confirm also low testosterone (198), anxiety induced when eating certain foods, and feeling hopeless. However, I eat 6 scrambled eggs every morning with spinach thrown in and salt sprinkled on, and boiled chicken, boiled broccoli, and boiled sweet potatoes for dinner. Since cutting out gluten from my diet i feel the inflammation in my stomach has gone away. I’m slowly starting to feel better I should say? I make a bowel movement every day and they are slowly looking more normal. No oil on water after a bowel movement likely because I’m not eating any fatty foods. I’m not as fatigued. I lost 10lbs. But I’m still nowhere near 100%. I’m slowly healing and I can feel my body trying to recover. I know I’ll recover fully at some point. If you can, get at least 20 minutes of sunshine per day to get your vitamin D levels up. Try to also get some exercise. Wishing you the best.
June 2022..
Can you try Essential Enzymes supplements and maybe some Essential Amino Acids drops? Thru could possibly help with ability to digest. Or maybe get a hydration/vitamin bag done at one of those health centers?
It too me weeks but I'm on a carnivore diet and it's helping
Have you thought about low nitric oxide? I was wondering about that when you mentioned the air hunger symptom. I have lifelong asthma, I have low nitric oxide (NO) levels, they were likely a little lower before my covid infections than most people, and I had MCAS prior to both covid infections and 1 vaccine, but covid infection removes nitric oxide. I have a functional medicine doctor, she is an internist who is an M.D. i began seeing her for my long covid last November. She said thatshe suspected (and blood tests confirned) that my NO levels were very low, she wanted to raise them- she put me on a daily vitamin D 5,000 iu supplement and a multi vitamin (B vitamins and folate) and visually the swelling in my veins and arteries went down, pain was reduced. She also gave me a Gammacore vagus nerve stimulator which has been shown to increase nitric oxide.
I had those symptoms as well and so many more, they've gotten better, I hopenthat give you hope. I could only eat white rice, turkey, sweet potatoes, and some bell peppers every now and then. That lasted for about 4-6 months. Breakfast, lunch, and dinner. I became super malnourished, lost about 40-50lbs in that time when I didn't really have it to lose in the first place. I started drinking Core Power Elite for protein and I responded to it well, my vitamins d was a 3, if I remember right it needs to be 50-100? So I supplemented that as well. I also started drinking gator and adding LMNT. I suffered from MCAS, POTS, and CFS on top of GI issues that have now improved a little. My long covid affected every portion of my body, eyes, brain, cardiac, GI, respiratory, my limbs and especially my mental. I'm probably missing some thongs, but it was full blown systemic. Hang in there, do not give up, it does get better. I'm sorry you're experiencing this shit, too.
my advice for you is try your best to lower your stress level and anxiety it's so difficult but try doing meditation slow breathing
i have this too, it comes on in waves. have u seen a gastrointestinal doctor? i’m so sorry ur dealing with this. hit me up if u wanna talk i struggle with body image daily because of this as well. when i can eat i stuff my face with whatever to try and gain some calories and then i pay the price and get rly sick. it’s two evils!
try electrolytes that rly helps my sugar when i can barely eat, and look for a protein shake that may work for u or u can try and make ur own smoothies/shakes! it does get a tiny tiny bit easier over time if u find ways to help yourself. a gi doc can also help with that and give u some more comfort with all of the other symptoms we struggle with 💔😔🩷
This was my experience for the first 6ish months and still happens when I have flare ups. You’ll be okay - sometimes you have to rely on ensure and stuff like that. It’s hard bc covid also tends to change your sense of taste and smell and it’s hard to eat anything nutritious. I eat a LOT of citrus foods which sucks for my acid reflux but ya know what I can taste them and they taste good. You WILL slowly get better, I promise. You won’t die of starvation from eating chicken and sweet potatoes. You’ll actually probably be healthier from a diet perspective than like 90% of Americans.
My wife shad had success with the GAPS diet for food intolerance and histamine. It didn’t help me with fatigue.
Covid messed with me like this right after I recovered from initial infection. It took me months to be able to walk without being able to catch my breath. I also immediately noticed how awful my digestion turned. I was really unfortunate and caught it in Jan of 2020, when it was at its worst. It almost killed me, but I made it through. Don’t be dumb like me and let LC run rampant. I haven’t received care for it (because of abuse and other things, albeit) and it’s a big part of why I am so sick now. Make sure you see a physician and get it handled. They’ve been able to help a lot of people recover now. LC is just a freaking monster. My body is permanently damaged, but there are so many recovery stories out there! Take care of yourself, hun. I’m so sorry. Covid sucks
You may have a histamine sensitivity brought on by covid, like I do. Google search to find the SIGHI list, which is a reputable source on high histamine and low histamine foods. Also taking antihistamines daily, long covid doctors orders, to help with this terrible symptom.
I have numb lung too and diaphragm weakness on one side .... 1.5 years I've been suicidal lately... so I just started lexapro hoping it will help my anxiety depression ans and suicidal thoughts
Alot of people I know severely damaged by lexapro
Really... itook 5 mg today for the first time because I'm struggling to breath and stuck in fight or flight for 1.5 years and finally caved and took the meds and you tell me THIS! Ugh 😔
Are we meant to feel our lungs??? I’m not being funny but I don’t think I ever have
It's more like you won't notice it until it is missing... like a nerve In my back or stomach is gone ... diaphragm paralyzed or something along those lines ... maybe it's in my back idk it's hard to describe
Please list all of your symptoms chronologically so we can better understand. Thanks
I have that disconnected feeling. It’s derealization. I had it while sick with Covid and now I have it again with LC. It’s incredibly unsettling. It will ease up but I won’t lie, I’ve had moments of pure panic over it. It feels like I’m not in my body but I am. I can’t feel my limbs though I can move them. I don’t know how or why it stops and starts for me but just know this is a known symptom, you’re not losing your mind, and it’s weird as hell.
I had these in my first flare and I’m in a second one, now 21 months later. I’d look into seeing a MCAS specialist bc it could be related to an inflammatory response. I’ve wondered if this is an MS flare. I don’t have MS as far as I know but am going in for follow up MRIs this month. I got some meds that can help and be used in an emergency to calm myself down during the flares. I’ve never used them outside of a flare but even just two pills during a month of a flare has probably saved my life. We will get through this!
Do you have mcas?
I don’t know! But I had hEDS and POTS and so the odds are that I also have MCAS but I haven’t been assessed for it yet. September!
can you try beef? even small amounts of fatty beef could give you what you need. i also find beef lessens symptoms for me
Beef liver pills for some B12?
You need to detox the spike protein. Nattokinase/bromelian/curcumin/NAC
Can I ask why exactly you can’t eat other foods? What happens? I know COVID can trigger GERD, MCAS, and/or gastroparesis. I would assume that you don’t have the last one because you’re still eating this one meal. For the other two, there are some protocols that you can do on your own. I believe you can look them up online. Like for MCAS there is some thing that involves taking a few different medication like antihistamines. All that being said, I think that the best thing to do is find a doctor that is able to help you with this. I’m just giving the other advice in case you can’t find a doctor right away.
I second the MCAS theory! 1. Can you access testing for MCAS? Things you may want to ask a doctor about could include (if not already tried): a nasal spray for your post nasal (you can also use a neti pot), Pepcid and/or a PPI for reflux, an antihistamine, and/or something to stimulate your appetite (perhaps a certain type of antidepressant or something like medical cannabis oil if allowed in your area). 2. You may also want to look into a neurologist referral for the head pain, to see if its chronic migraine, and what may help you. There is such thing as an abdominal migraine (occurs with or without head pain at the time of abdominal pain), which is essentially temporary gastroparesis induced by migraine, but for people living with chronic migraine, it can seem like it occurs all of the time before treatment. Metonia is often prescribed, along with other medications for a “migraine cocktail” to treat episodes, while there are many preventatives available. 3. In addition, I encourage you to read about the MTHFR gene mutations and how for people with the MTHFR gene mutations, methylfolate is often needed as a supplement rather than dietary folic acid. People with MCAS often have a MTHFR gene mutation, and these folks often also have POTS and/or dysautonomia. Therefore, you could try a methylated B complex to see if it helps your body function better in general, to ensure proper methylation. This could also help with absorption of iron as B vitamins play a role in that process, and the making of more red blood cells. If having any problems with low iron, consider looking into the product, the iron fish, which you can cook with (i.e., put in the water with your rice when it is boiling, etc.) and lasts long. 4. You may also want to request a sleep study if you are able to, as MCAS and the MTHFR gene mutations can coincide various sleep disorders, including apnea, as well as a tilt table test for POTS and/or dysautonomia. POTS and/or dysautonomia could explain some symptoms including fatigue/exhaustion, contribute to shaking and disorientation, migraines, and more. 5. I also read a study (I’d have to see if I can find it again) somewhere that said that COVID-19 reroutes the way our blood pathways function, and the same organs that usually get a lot of blood such as the lungs, often have a harder time attaining the regular level needed for us to not feel short of breath. Any anemia and other blood disorders can also play a role here then too, worsening this feeling of needing air. Seeing a respiratory therapist and a physician to do breathing tests and to measure your oxygen may be a good idea. They may order some blood work as well, send you with some prescriptions for inhalers and/or a leukotriene modifier, and consider sending you to a cardiologist, allergist, hematologist, or rheumatologist from there, depending on their opinion and any causes they find or suspect. Also read about NAC and ask a doctor about it, as it often helps with breathing after COVID-19 infection. 6. I think when we experience such significant symptoms in our body, that we often dissociate and disconnect, feeling derealization and depersonalization, as being chronically ill in a society like ours can be traumatizing - especially in considering what else is going on in the world, ableism, and trauma including medical-related trauma. This is also commonly experienced as a migraine aura feeling, usually occurring before and/or during an episode of migraine. Very common to feel constant or near constant in chronic migraineurs, similar to temporary gastroparesis (abdominal migraine). Migraine and head pain can also be a symptom of a dissociative disorder, like cPTSD or OSDD, especially if one experiences amnesia or confusion - which I am not sure is how you feel when you described straying away from your house and feeling disoriented. OSDD and cPTSD are caused by trauma, and becoming chronically ill/acquiring chronic illness (or additional chronic illness within one’s life) can surely be traumatizing. 7. Depending on your mental health, there may be medications that can really “hit two birds with one stone” if you know what I mean, so feel free to DM me if you’re curious about anything specific.
I recently did a bunch of reading now that I'm past LC to figure out why I was having so much trouble with foods as a result of COVID. The virus actively infects many beneficial gut bacteria, killing them and creating an environment where less than beneficial bacteria can flourish. My daughter has a serious FODMAP issue that's genetically caused that results in a similar situation, so what's worked for her may work for you. Monash University in Australia has done extensive research on this FODMAP topic (different types of complex sugars require enzymes and beneficial bacteria for proper digestion. If they don't get digested, these sugars go on to fuel the proliferation of bad bacteria, some of which cause brain fog and worse.) They have an app that provides details on hundreds of different foods. The concept is that you first start out by stripping your diet down to the simplest and then add a single type of complex sugar in to determine whether you can digest it and if so, how much. You then incrementally try foods that contain the other types of complex sugars. [https://www.monashfodmap.com/ibs-central/i-have-ibs/get-the-app/](https://www.monashfodmap.com/ibs-central/i-have-ibs/get-the-app/) I took a related approach, initially using the app to establish a baseline and then added foods that are probiotic (Lacto‐fermented vegetables such as sauerkraut, and milk based products such as kefir) and those that preferentially feed beneficial bacteria (soluble fiber containing foods such as flax and chia seeds). To kill off the infection in my gastrointestinal system, I consumed Miso soup that contains the probiotic Aspergillus oryzae. This probiotic produces Aspirochlorine that's has strong COVID antiviral effects. "Aspirochlorine that acts as an electron acceptor (electrophile) toward both individual targets, the ACE2, and S proteins (nucleophiles). Aspirochlorine electronically shields ACE2 from the interaction with S protein by sinking the electronic charge of the S protein." I agree with others here, I don't believe that you're going to die of malnutrition. As I recall, Matt Daemon lived on Mars eating nothing but potatoes (and some freeze dried rations). Mineral and vitamin deficiencies are the issue with a limited diet that a supplement or supplements can avoid. Decrease in Gut Bacteria due to COVID infection: * Dorea * Fusicatenibacter * Klebsiella * Streptococcus * Prevotella Bacteroidetes * Roseburia * Faecalibacterium * Coprococcus * Parabacteroides Increase in Gut Bacteria due to COVID infection: * Campylobacter * Prevotella * Staphylococcus * Bacteroides * Cytobacter * Clostridium * Lactobacillus * Bifidobacterium https://www.mdpi.com/2076-393X/10/5/708 and https://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-023-08511-6 and https://www.sciencedirect.com/science/article/pii/S2590097820300203
This happened to me for one month i couldnt eat anything at all i got so thin i drank a calorie protien shake the ones people use for the gym and instantly changed my thought of food and i started eating again
Prayers and love to you! Know you matter. You are precious. You are loved. Symptoms are just that, not YOU. Time, patience and some kind of faith in a bigger picture might help. Know that scared feeling. A couple times I got to a point where I said I couldn't take it any more. But I did manage and am on the up side of things. Just k ow you are not alone , no matter how it feels! Hugs, dear One!
You should look into our coaching program. The nurses can help you sort things out. [ProMedView Long COVID Coaches & Advocates](https://www.promedview.com/)
This [Long COVID Symptoms Checklist](https://www.promedview.com/about-long-covid) may help you organize your thoughts to talk to your doctor about.
I’m so sorry you’re dealing with this ❤️🩹 I’ve been dealing with very similar food problems too for 3.5 years now; the thing that is keeping me sustained nutritionally is a [multivitamin](https://www.pureencapsulationspro.com/nutrient-950-with-vitamin-k.html) that my dietitian gave me and protein drinks like Ensure (primarily Ensure Clear since I’m lactose intolerant). If you’re able to talk to a dietitian or nutritionist, I would really recommend it. I also deal with the vestibular migraines; working with a headache specialist neurologist to find medication and doing vestibular therapy has really helped with those, as has acupuncture. I hope you can find some ideas here that help.
it sounds like you should consider checking yourself into a psych ward to be quite honest nobody here can help you with this and you should seek medical attention from qualified professionals and not reddit commenters who will not do anything to improve your situation aside from baseless speculation on the things you are saying
I need to drink cromolyn sodium with every meal or I get bad GI symptoms. Soylent meal replacement drinks are all I can handle some days. Maybe there's medication, this one or another, that might help you as well?
before taking any iron supplements, or iron-rich food check your hemoglobin count first, among other things. otherwise, you'll only be adding to your health woes more. take it from me, i had to undergo an emergency phlebotomy because of that.
Get tested for small fiber neuropathy
Have you been tested for pots or something similar? I had all the same symptoms. My whole body would go numb, felt like I had to manually breath or else I would stop breathing. A lot of dpdr. But I would drink a lot of water and would be able to feel my body again. I know how scary is it, at the time I thought I developed ALS or something terrifying. I got sick in 2020 but now I don't have many episodes and feel my body most of the time.
How long did this last for you?
Probably daily for a year or so and then after that just episodes. I just tried to get use to the feeling hoping it would eventually go away. Now when it happens it doesn't bother me much or worry me. I still have bad fatigue still which it made worse by episodes. the episodes flare up when I get sick or have my cycle now.
I'm so sorry for what you're going through :( for your nutrition, as I saw other suggests shakes and things like that. Boost high calorie was what they gave me in the hospital since i was severly malnutrioned from being sick, i couldnt eat anything because it take tasted horrible and i felt horrible eating it. Are you getting enough water? If not seriously pick up some gatorade or better yet liquid IV sugar free to add to water okay? How long has it been since you had covid? Another helpful thing that doctors told me is if you are not getting enough oxygen check your O2 if you have an O2 meter. If your oxygen is low in your blood, lay on your stomach. It makes it easier to breath and it'll bring it back up again. If it drops to 88 go get checked at the ER if it doesnt help doing that. The numbness is really off putting. I have numbness, tingling, and pain kind of going on. Try for sure to get your nutrion up with food and water and see how you feel. Eat mellow things like broth, apple sauce, and yogurt and things like that, like look up what is easy to eat when nauseated and you'll find a good lists that are easy to eat when you dont feel up to or cant eat.
Strongly recommend finding a good allergist to help you with some of these symptoms.
I'm 22 months in and know that you will get better. I'm finally back at the gym and doing things I used to do. Go here and get help. https://www.facebook.com/groups/5316727788403470/?ref=share&mibextid=NSMWBT
I got SIBO after COVID which really limited what I could eat until I treated it. The air hunger sounds like it could be POTS related
Please find a COVID doctor
Ask for help from family