The Long Covid Collective

Hi Jemma, I stumbled on your account having been in a rut since I was infected with post Covid back in 2022. It Left me practically half paralysed. Thankfully that is no longer the case. My brain was also no longer functioning normally and it was like I had a split personality living from the outside looking in. I knew something was really wrong when I screamed and yelled at my best friend who was 8 months pregnant at the time. I was never a violent person. I also nearly burnt our house down, twice, because I forgot to turn off the stove (thankfully my husband woke up in the middle of the night and smelled the gas). Etc. Etc.  Anyways… As you know, all in all, I had countless symptoms/ incidents(cognitive and physical). I was labelled (like many others) burnt out/ psychosomatic. But, to me it wasn’t logical, it…

Hi everyone! This community is so great, I don’t know too many people suffering from long Covid irl, so this platform is a really great way to connect. My story in short, I was a competitive gymnast for 8 years and a highly competitive cheerleader for 3. The end of my third and final year of cheer my routine was the hardest it’s ever been and I had just recovered from Covid. I’d never had any chronic health issues until this moment but I was struggling to make it through my routines. I was weak, my heart would race, I’d get SOB, among a whole laundry list of symptoms. Somehow I made it through the season after constant gaslighting and everyone telling me it fine and it’s just anxiety. ( I was diagnosed with OCD prior.) After countless doctors visits I was finally diagnosed with POTS, now redisgnosed with dysautonomia…

Hello everyone,

I would like to share my story.

I was at the half-point mark of my PhD in chemistry and at the time practicing for a half-marathon while trying to maintain enough muscle for my long-term goal of participating in a body-building competition some day. I had just been lifting 80 kg 3X12 times and ran 14 km on the weekend in good time and 2 weeks later I cannot get up from bed to get a shower. And mental tasks are even worse up to the point that I got dizzy from reading only a few sentences. And all this is here to stay....

I took a huge part of my mental health and feeling of self-worth/self confidence came from sport and a bit from telling myself that I am halfway intelligent person for being able to do a PhD. Needless to say, that now depression is creeping…

Hello! I'm Anna, I'm 21 years old and in July I had a bad viral infection that caused me a tracheitis, I really think it was covid. I was very scared especially because the symptoms did not go away. Now, after almost 3 months I have tachycardia, circulation problems and I always feel my ears and head inflamed. Burning and discomfort such as creaking ears are the thing I can hardly bear. Is there anyone who has these symptoms? If so, does ear discomfort subside? Do you have any tips for managing pain when you can't seem to be doing it? One more thing... Is there hope? I read many bad situations about long covid and I would love to get back to feeling good

Hi everyone, I'm lexy! I hope everyone's having a great day!

I first developed covid November 2020 and I was diagnosed with long covid January 2021. My main symptoms were: shortness of breath, chest pain, fatigue, migraines, PEMs, I had also developed MCAS due to covid. My covid journey has been up and down. However, it was until October 2023 where I had my first relapse in over a year and now, I have all of the above plus neuropathic pain -constantly, costochondritis and my mental health hasn't been the best.

But I can honestly say, my doctors have been good.

The Hardest thing for me is, before long covid, I was fit, active and healthy. Now I've gained 20kg in weight, I can't do any form of exercise. Its ruined my life.

Hi, y'all, I hope everyone is having a good Friday or at least counting down to the weekend!

I wanted to share an experience I had earlier this week with you all because I truly feel that this is the only community that will understand my frustration.

Earlier this week, I went to yet another doctor's appointment to get the results of an extensive immune system test. My providers were concerned that my immune system wasn't doing its job, and that was the reason why my bout of Covid was so serious, especially since I'm "so young." After the Pneumovax shot, my immune system numbers went up, which is good, ruling out immune deficiencies and autoimmune disorders. The only conclusion was Long Covid. I was so frustrated because I just wanted an answer with a solution. Right now, there are no LC clinics in my area, and I feel lik…

Hi, I'm Emily, I'm 31 and I started having symptoms at the end of 2021 then was officially diagnosed in August 2022. My main symptoms are bad fatigue and PEM, migraines, muscle cramps and muscle and joint pain, breathlessness and brain fog (which is better than it was but I still struggle with by the evening)..it's like my body is constantly on low battery mode.

I was working as a physiotherapist which I loved, but had to give it up because I just wasn't physically able to do the job but I'm lucky to be able to work from home with a very understanding employer who gets my fatigue. My boyfriend also left me because he said he couldn't imagine a life with me where I was disabled long term, so honestly it's just been a really horrible, isolating time.

I also don't know about anyone else but I have…

Hello Jemma,

I have noticed on one of your videos that you might have Rheumatoid Arthritis, I am very interested to know if it is linked or can be linked to your long covid or covid vaccines if you have taken any. (I had pfizer).

June of 2023 so many of my joints swelled up to the point that i couldn't use my arms to put a t shirt on, shower, cook or even sleep ok. Learned a lot about RA and especially learned that doctors love to tell me the fact that RA is usually common in women and not men which is always fun to hear. I was 28 I was diagnosed with RA.

It would be great to hear your story and happy to answer questions about RA. I really hope you don't have it.

Best Wishes,

Hany

Hi, im triona. I'm 40 and I've had long covid since March 2022. My symptoms started abruptly when I got covid with a very severe chest pain that also radiated out my back. It was so extremely painful and I found it difficult to get my breath that my husband rang an ambulance. They sent me home hours later telling me the usual....everything looks fine. I spent march to May in absolute agony. Constantly at my Dr begging for pain relief. Nothing they gave me worked. I ended up in hospital again the end of May and spent 3 weeks there. They did mri's, xrays, blood and nothing showed up. And yet again they sent me home. I was unable to stand up and even get myself to the toilet. My husband had to lift me. It was the most horrific experience. I've 2 daughters, who were then age 9…

HI. I’m Tara and 45 yrs old. I’ve had Covid 3 times and each time it leaves a new Long Covid issue. 11/2020, lost taste and smell and fatigue. 10/2021, migraines, extreme fatigue, brain fog, depression, anxiety, and muscle weakness. 10/2022 ear ringing. I’ve been a part of clinical studies and tried so many solutions but nothing has helped to this point. What I have feared the most is that because of Covid a cyst has developed in the middle of my brain, Sjorgens was diagnosed, and I have MS like symptoms. Some days are much better than others and grateful I can still push through work most of the time.

Hello! I thought I would go ahead and share a short summary of my story to encourage others to share their story in the same way. My name is Jemma, I am 24 years old and I have long covid.

I have been fortunate so far to not have had it for long, as I know others have had it far worse than me and for far longer and not mention those within the ME/CFS community.

I have numerous symptoms at the moments, namely, extreme fatigue, breathlessness, nausea, heart palpitations, migraines, lightheadedness and many others. But the good news is that I am having better days!

I really hope to hear from others about their own stories. This is a safe space and any research, resource, comment, plea for advice, support or any thought can be shared and discussed.

Sending you all so much love! We are in this together.❤️