COVID-19 long haulers: Why are they still sick?

Feb 2020 long hauler here. Coming up on three years of this horrific illness. I used to be incredibly healthy and happy and active, now I'm barely a shell of my former self. Here's to all the others suffering from invisible illness like this. You are not alone. I hope and pray we will all find adequate treatment.

I’m on month 5 suffering from Long Covid. It is a debilitating disease! Everyday is a different symptom. It is scary not knowing what’s next and what my future holds. Whoever is suffering please don’t give up. If your doctor says it’s all in your head, change your doctor!

Almost a year for me. It ended my 39 year nursing career. I'm now disabled using a cane. Severe neuropathy which I didn't have before. My oxygen still drops in the 80's with much exertion so I still need oxygen at times. My thought process is much slower. Severe pain at times. Severe rib cage pain. Strong smell of smoke all of the time. My vision is terrible. I'm a puzzle piece of the person I was before. Still, my spirits are high ! I'm alive and thankful.

The worst part for me is, everyone around me don’t understand and some think I’m just making things up to get pity from people. Now I just keep things to myself. Even my doctor can’t help, there is no medicine or anything for me except eat vitamins and eat healthy.. Hopefully everyone will heal from all this craziness

I followed the following program I put together, as an occupational therapist: - Vagus nerve stimulation - breathing techniques - relaxation therapy - neurodevelopmental therapy - 70 - 99% cocoa dark chocolate - vitamin D - red grapes - board games: sudoku, solitaire, chess, dominoes, crosswords. - cetirizine

I am 24 years old. I had mild symptoms when I first got Covid. I tested negative few weeks ago but still experiencing chest pains, heart palpitations and dizziness. Recently I found out I have ischemia which was shattering because I am so young. I also went to multiple doctors and they told me I have anxiety. It was the hardest time of my life because no one believed me not even the doctors.

I have been dealing with Long Covid about 12 months. Brain Fog, Exercise Intolerance, General Fatigue. I can't seem to get the energy to work out because my heart and lungs just don't function like normal. It is so depressing my mental health is suffering as well. A terrible reality, but I see that many others have it much worse. I also see that many others who have received the vaccine have experienced exacerbated illness. I have cleaned up my diet substantially, started breathing exercises, taken up more reading, and made many lifestyle changes. In my research I have found that is important for individuals like myself to KEEP MOVING and KEEP UP COGNITION. Do not succumb to the exhaustion. Keep doing what you can, and aim for small improvements while always listening to and respecting your body. Much love and wellness to us all.

Long haul COVID is exactly what the ME/CFS and lyme community have been dealing with. Definitely causes auto immune and chronic symptoms affecting every bodily system.

I mentioned in an email to all Canadian Health Ministers back in March 2020 that this was possible as this happened to some who were infected with SARS back in 2003. Not a single minister replied!!! Our entire household got COVID at the end of 2020. My wife ended up in the hospital for 5 days. She went through months of different therapies as it affected her memory, speech and coordination. One would think that she had suffered a stroke. One of the biggest problems around the world is that countries release COVID numbers as number of cases, recoveries and deaths. The public sees all the recovered numbers and believe that it's not that bad. All those recovered numbers indicate is recovered from infection. Not recovered from the "Effects" of the infection. If people knew the likelyhood of suffering debilitating effects from COVID, perhaps they would take it more seriously.

This is me literally me! I’m so glad to watch this knowing I’m not alone and that I’m not crazy! I use a walker as well because long distance walking and standing for a long time is VERY hard for me to do. I also suffer from mild hearing loss, hair still falling out, headaches, EXTREME back pain, stomach issues that they still have not been able to diagnose, and extreme sweating. It all sucks but again, I’m so glad I’m not alone…. i had Covid back in December of 2020. I was BLESSED to get an infusion at that time that saved my life!

I am glad that I am not alone in my long covid journey. I had every side effect i can imagine, and it changes every couple days or weeks. It literally started with migraines, and has went throughout my body. After heaches, had a horrible head cold, then muslce aches in my neck down to my back, and now in my right leg. I currently can barely walk, because the pain is so horrific. I have been to the emergency room and doctors office multiple times in the past 2 months. I first tested positive March 9, and then negaitve a week later, but am still healing. Just when i think the new pain is over, something else pops up. It is really debilitating physically and mentally. Especially trying to work and keep my job with mulitple absenses. But I still find a way to stay positive every day. I dont wish this disease on anyone.

I experienced something very similar to the sixty-year-old gentleman who plays hockey. I became sick in March of 2020 and also had covid toes. Although it took me over a year to get to a good place with my breathing in general, I found that when I went back to sports around that time I struggled still with shortness of breath and a very high heart rate. I kept at it thinking that it might be due to deconditioning after a year of limited exercise and much of that time being very sedentary due to weakness and breathing issues. Sure enough, I have steadily improved the point where I'm now back to myself a year and three quarters after the initial virus. I very much hope that these people are able to find Health again.

I had a friend that was in the ICU and they were getting ready to put hin on a ventilator and a friend snuck him in ivermectin and the next day he was out of the ICU and walked out of the hospital 6 days later. They were in total awe, and acting like a miracle happened, (he was scared to tell the Drs he took it). The dr.'s refused to give him ivermectin so he got it on his own because he really has nothing to lose at that point and it saved his life. I know this isnt about long hauler covid but I thought it still might help someone!!!!

I had it in November 2020 and just couldn’t seem to get over it completely. Then in April 2021 I took the vaccine. First shot was no big deal. Second shot made me as sick as the initial disease and now, mid December 2021, I’m still suffering tons of symptoms. I already battled Multiple Sclerosis and now my doctor says that there’s no real way to separate the MS and COVID-19 symptoms. An MRI might show something but nobody knows. I’m gonna insist on those MRIs, with contrast and without. Any new lesions should tell me something!

I had something nasty in 2019, first doctor said it was strep, antibiotics made me worse, the next doctor said it's mono, it went on for months. Had to quit my job while I recovered because company wouldn't let me work from home or take sick days. Health went up and down - I tried again, I told my symptoms (long list) to a doctor and she took a look at my throat and she said "you got thrush from the antibiotics!" (candidiasis) she prescribed me antifungal treatment and I felt 110% better, it was an amazing difference. If you took antibiotics as part of your treatment (it's sometimes to prevent bacterial pneumonia), weak immune system + antibiotics can make you extra susceptible to fungal overgrowth. This is just anecdotal, I don't want to give medical advice, but it's something worth asking your doctor about.

I feel for her because I’m going through it too. Same exact symptoms. Only working part time and it’s greatly impacted my life

So many unknowns with this disease! The stress is incredible. It seems we should have much more of a handle on this by now.

I was a 35 year old athlete with no pre existing health conditions, and now I can only go for walks and I'm too exhausted to do anything else. I felt like I was hungover every day for 2 months. I couldn't focus or remember things, it's improving, but I'm still a long way from the man I was... this virus is hell. It's been 5 months, but I'm determined to not give up

I am so confused . What the hell do these people have in common ? Some say you only get really sick if you're too fat but I've seen young healthy fit people die . This whole thing is insane .

Fibromyalgia and ME/CFS are very similar. We could have more answers for long-covid if we had studied these other conditions. Sadly, these patients were dismissed, told it was in their heads, told it was depression or get over-medicated in order to shut them up. I hope that we will FINALLY have a decent budget for post-viral illnesses and be able to help not only the long-haulers but many people whose lives were ruined by fibro and/or CFS/ME.