Coronavirus Disease 2019 (COVID-19)

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I’m new here!

Hi, my name is JayAlan210. I'm here because my adult daughter has been with cfs/me/long COVID and needs support and care and she is depressed.

#MightyTogether

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Have you had the Novavax vaccination and has it prevented Long COVID?

So I got COVID-19 for the second time just over 2 weeks ago, and am unvaccinated. I have increased fatigue from the first time I got it more than 2 years ago, which has left me unable to work, whereas previously, with lots of treatment, I decreased my fatigue enough to work part-time.

I have CFIDS with immune defiicency and autoimmune thyroiditis. So I can't take any vaccinations using an autoimmune delivery system, which leaves only Novavax.

The only reason I would be interested in taking Novavax is to prevent Long Covid to try to get working again, since I have strong lungs and don't end up in the hospital with COVID-19. I am still trying new treatments for my immune system.

So have you taken Novavax, and if so, what was your response to COVID-19 after taking it? Are you immune deficient?

Thanks so much for responding to this. If you wish to speak more privately instead of posting here, please don't hesitate to message me.

#ChronicFatigueSyndrome #MyalgicEncephalomyelitis #HashimotosThyroiditis #AutoimmuneImmunodeficiency #COVID19 #longcovid

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I'm new here!

I've lived with Kartagener's Syndrome and Primary Ciliary Dyskinesia since birth. It's akin to battling Covid, the flu, and pneumonia daily! For years, I kept this struggle hidden until I reached the milestone age of 50. That's when I decided to open up about my condition. It marked a significant turning point in coping with an incurable disease that has been with me since birth.

I've now started a site for this rare disease and a blog. Time to share what it's like to live with something every day. Not something you just got diagnosed with as an adult. It's very different. I've never known what it's been like to be "healthy." Only what it's like to have a cold for all of your life and listen to people say how horrid having a cold or flu is or how terrible Covid was. My life isn't terrible so I wish people would stop saying when they're sick it was so terrible. That's why I knew it was important to start sharing my story.

#MightyTogether #RareDisease

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I’m new here!

Hi, my name is isamae13. I have been dealing with chronic illness since I got mono in 2014. I have had three active mono infections over the last three years. Several surgeries and deal with chronic pain and chronic fatigue. I have been making improvements in the last 3 years since COVID helped me to slow down but also as I entered the professional world and got married I am realizing that my bad days are harder when I do have them. I’m needing extra support of people who get it.

#MightyTogether #ADHD #Fibromyalgia #chronicfatigue #pots #Migraine

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2.5 crap months, and at least another 3 to come... don't you love medication brand switches for no reason 😬

My rheumatology department switched me from Imraldi to Yuflyma at the end of January. They're both adalimumab but as they're proteins the structure isn't exactly the same. Having said that they *should* work the same as the active site should be the same. Basically yuflyma is cheaper so it costs the NHS less. I was willing to give it a go as its the same medication, although I knew there was a risk it wouldn't work, and well it hasn't... rant incoming!

The last 2.5 months have been sh*t. I had a flare in January before I switched brands- I was getting about 2 flares a year and this one was expected. It was treated with oral steroids. Tbh this flare wasn't too bad as the Imraldi was still working in the background.

Then I switched to Yulfyma. 5 weeks after the last flare (and last Imraldi dose), bam another flare. Again treated with oral steroids which took a lot longer to work than usual, probably because the Imraldi was very low in my system by this point. Rheumatology agreed I might need to switch back, or it could just be an effect of switching brands, so we'll revisit it at 12 weeks of the new brand (it takes 12 weeks to build up in your system to get the full effects).

Well, now 5 weeks after the last flare I'm in another one 🤦‍♀️ I'll contact rheumatology on Monday, get more steroids and switch back to Imraldi. But that also means facing another 3 months of this flare cycle once I get Imraldi back and that could take a little while.

So I'm facing a minimum of 3 more sh*t months and I'm fed up already. There's also no guarantee Imraldi will still work 😫

That 3 months of known crap health overlaps with the spring qualification series for English and British trampoline gymnastics where I compete in the disability category. How utter *insert string of expletives here*. I've been working so hard for 6 months to prep and build up to the season and make improvements to my routines and now it feels like that's all gone out of the window. I had a crap season in 2019 before the pandemic put a halt on everything, and last year was my first season back that was also marred by an injury and then covid. Can I not just catch a break and have a good season for once? 😡

Oh and did I mention that I've got a 3hr drive tomorrow to work from a different office next week? Why do flares always happen at the worst possible time. 😮‍💨 Next week is going to be hell but at least I'm closer to my rheumatology department.

So yeah 2am, I'm utterly broken, fed up, anxious, low, and at my wits end. I don't know what I can do right now to feel better as I've already tried everything. Oh and did I mention I want sleep? Chronic pain sucks.

Somebody just please make AS piss off now and leave me alone for once 😢

#ChronicIllness #ChronicPain #axialSpondyloarthritis #AnkylosingSpondylitis #Arthritis

6 reactions 1 comment
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I'm new here!

Hi, my name is Bbuzzb. I'm here because I have had fibromyalgia for 30 years, depression most of my life and Long Covid for 4 years. Since suffering from long covid I have also experienced a form of grief for my previous life. About four and a half years ago I decided to go vegan and the effect it had on me was amazing. I realised that I really had been suffering with fibromyalgia for all those years (I had doubted myself sometimes). I had so much energy. Then I got long Covid and am back to chronic fatigue etc again.

#MightyTogether #Fibromyalgia #Depression #PTSD

2 reactions
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I’m new here!

Hi, I’m CRound3.
I have Long Covid and it has neurocognitive impacts— making my anxiety and OCD worse than it was before. Just here to share and to learn from others.
#MightyTogether #OCD #Anxiety #Depression

6 reactions 5 comments