Long-Covid symptoms help

Posted by covidsurfer81 @covidsurfer81, Jul 23, 2023

Hi everyone.

I’ve been suffering from I’m pretty sure are the effects of Long Covid, but I’ll try to give as much details as possible, as I’d really appreciate any advice it insight on how long this is all going to last for me.

Here goes.

Roughly 6 weeks ago, I fell very ill with the usual onset of symptoms: Fever, headache, cough, body aches, loss of taste/smell, etc.
I took a Covid test and it was surprisingly negative. My working theory is that I was actually positive and the test just registered a false negative.

After roughly two weeks, the flu-like symptoms resolved, however, I was left with horrendous body aches, debilitating fatigue, brain fog, itchy rash/hives on fingers and hands, loss of appetite, occasional irregular heartbeat here and there, and personality changes.

The symptoms fluctuate from me almost feeling normal again and go right back to leaving me bed ridden. It’s like an endless rollercoaster of nonstop symptomatic hell.

I can’t work or really do too much of anything, so I’m pretty much relegated to laying around the house and googling to try and find some answers as to when this nightmare will possibly come to an end.

If anyone either was or is in my position, I’d gladly appreciate any insight or speculation as to when this may fully resolve.

Thank you and I hope to hear from at least a few of you out there.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

car0 | @car0 | Jul 24, 2023

If you can get a PCR test you can know if you’ve got it for sure. I’m so sorry you are feeling awful!

okradurham | @okradurham | Jul 24, 2023

I have been trying to recover since February. The main thing I learned is listen to your body!! Really listen! I would try to go go go and then crash and be worse off than before! It truly can be awful but I am getting better finally . I have two good doctors , am taking supplements religiously and listening !! No one has a silver bullet and it is a pretty serious thing not getting much press. Once again is it because the majority of long Covid sufferers are women? That could be true ! Anyway patience , kindness to oneself, and helping your body with REST and lots of water . Body aches are helped with tumeric and magnesium, Tylenol . Tiredness ? Just give in ! I have actually left in the middle of a therapy session as I could not bear being upright any longer. Time is being robbed from me But what can one do?? Just hang in there! I truly believe you can do it!!!

rmca | @rmca | Jul 24, 2023

Sounds like you are where many of us have been. You absolutely must read up on cytokines / histamine involvement in long haul symptoms. This is really where it’s at for treatment and resolution. You need specifically to research the use of Zyrtec(citirizine) and Pecid(famotidine) for the symptoms you are having. Cured mine. Over the counter remedies that are working for many people. Itching cured. Other symptoms mellowing as cytokines are less expressive. The fatigue is the leftover symptom for high percentage of us. But you must get some movement/exercise in. I do it daily. Muscles waste and sap strength further. If you have a decent doctor who is willing to listen talk to him about the research. Or find another doctor. Take the supplements that have been found to help long haulers. I am miles ahead of where I was 2 1/2 years ago.

car0 | @car0 | Jul 24, 2023

Be very selective in your reading/—even to these chats. I’ve heard people say “ so what you need to do… is ___, and now I’m cured” or “so much better.”
And look— I’m sure it worked —-FOR THEM.
If there was a one “thing” or approach that fixed or explained Long Covid? We ALLLLL would have been on it years ago! We are all so anxious to feel better…But I’m just suggesting that if a chatter says “do this” and you decide to try it? Do not become discouraged if it doesn’t work. I’ve written this in another chat, but from these chats I’ve seen threads from people who have gained weight unexplained/ lost weight to dangerous levels; had an inability to swallow because of too much post nasal or etc/ people needing help for incredibly dry throat; people sleeping or sleepy all the time/ folks with EXTREME insomnia. Point is— it is all Long Covid, and it is effecting each of us differently— and in a body specific way. That means, as far as I can tell? That each body will have their OWN personal symptoms that need to be dealt with.

jimmiep | @jimmiep | Jul 24, 2023

I've had this fine new disease for 7 months now. Almost the same symptoms.. I've read everything I can find on every sight that offers any info from John Hopkins to duke to Israeli sights. This bug is are new normal and it sucks. Be ware of Aviv clinics. Listened to his webinar the other day. A real life snake oil salesmen that found a new avenue of people suffering to grab money from. Good luck on your new normal.

complete360 | @complete360 | Jul 24, 2023

Oh, this new normal for so many. 😔
I had COVID in October 2022. 2 months prior to onset, I was bouldering, rock climbing and working 12 hour shifts in manufacturing.

COVID itself was not terrible. I took paxlovid and then I developed pneumonia. 3 rounds of steroids, rescue inhaler, and nebulizer. ( I was never hospitalized)

By Christmas of 2022 I could barely breathe after being up for 15 minutes or so. By January of 2023, I was having cognitive difficulties. I had to stop driving because I would get lost in my home town.

February 2023, I start this uncontrollable jerking (which I later learned , was posturing.

12 different doctors in my immediate tri-state area and no one had a clue.

Finally, on the recommendation of my therapist, I went to the Mayo clinic.
I received more understanding, kindness, and now answers to so many questions.

I am 9 months post covid.
I am confused most days.
I walk with a walker.
I can no longer work.
I can no longer play with my 4yo grandchild.
I do not see family as often because today's world is busy and I can not drive.
I have dystonia which can be embarrassing.

My hope is eventually walking longer than 10 minutes w/o a walker.
Understanding people and words most days.
And just being involved in some small part of the world.

Keep your chin up. My neuro is hopeful things will get better. Just don't stop putting one foot in front of the other.

beebee000 | @beebee000 | Jul 25, 2023

In reply to @car0 "Be very selective in your reading/—even to these chats. I’ve heard people say “ so what..." + (show)

i agree, we are all different even with similar symptoms and what helps one person might not help someone else...i also believe being careful with meds ,etc that could have side effects for some...go slow, this is not an over night fix, this virus is obviously powerful..and we still don't know why it hits some harder and stays longer in some people, hang in there..

RR | @rachelr | Jul 27, 2023

In reply to @rmca "Sounds like you are where many of us have been. You absolutely must read up on..." + (show)

What supplements help long haulers?
RR

lindy1965 | @lindy1965 | Jul 28, 2023

The article below describes my life now. I used to work a full time job, exercise, walk 3 miles per day and care for my elderly Dad with Alzheimer’s etc…. I feel It might be helpful for people to post ‘specifically’ the supplements they use that actually have made some improvements in THEIR symptoms. I have a whole cabinet dedicated to a bunch of supplements that have NOT made an improvement. I don’t think by any means this is a ‘one size fits all’ situation
I am super overly sensitive to medications so I’ve had to try a lot of different things.
The ones I currently take that I feel could be making a small difference in my life.

SuperLysine
Monolaurin
EPA/DHA
VITAMIN C 500 mg
Vit D3
And a good quality multi vitamin.

I tried the Zyrtec/Famotadine ..still take the Zyrtec because it helps me sleep a bit but after getting some testing done was told that I don’t have a histamine problem.
Keep in mind I also have EBV reactivation with my long Covid, I have been sick since 4/2020 and I’m still debilitated. My most debilitating symptom I must say is fatigue. Dysautonomia, tachycardia, insomnia ….
‘Wired but Tired’ to list a few.

Take a moment to read this… it may or may not describe you. I only wish all the people (left) in my life would take a moment out of their busy, fulfilling lives to read this so that no one else says to me “ Yeah, I’m tired too” before they run off to enjoy their night out with friends.

I wish everyone here the best. I pray that someday soon we’ll all be recovered and living our best lives. Much Love 💗.
https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/

rmca | @rmca | Jul 28, 2023

In reply to @rachelr "What supplements help long haulers? RR" + (show)

I offer you what I have read, but it certainly would depend on your symptoms and making sure the supplements don’t interact with any meds you are on. I Google everything. Highly touted are B vitamins, vitamin D, Turmeric, Quercetin, NAC, Magnesium, Zinc, B12. Must have thorough blood work done to see if you are out of range on anything. I print out research that supports my requests because doctors are long haul phobic in many cases and don’t know what to do for you.