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The Long Covid Collective

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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.


Hey Lexy,

I’m sorry to hear how cruddy things have been. Relapses are so crap! I’m in a significantly long relapse after pushing through at work last year, I empathise with you truly. I’m glad to hear your docs have been good :) I think having a supportive team around you is so important. Not that it makes the difficulty of everyday living suck less! I’m firmly at one with my settee, I used to be outdoorsy but I’ve had to put that on hold. It’s really a hard, with these symptoms that turn life upside down. Know that you’re among friends here so do keep reaching out to share how you’re getting on and if there’s any help you need :)


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…

It's okay to be frustrated... because it's frustrating!! I don't have any skills to perk myself up, but I generally "allow" myself to rest without feeling guilty about it, which seems like a small thing, but isn't. You are not alone in this. It can be lonely, but you are not alone.


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)'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…

Krisztina Koncsek

My 1st day of waking up this way was Dec 15th, 2021! And my fiance left me too! Twinning! 😋😅

In all seriousness, the loss of my life was hard but losing my partner to a chance disability was definitely the hardest. I have learned that it's not my fault and does not reflect upon my own self worth. We are still the same great people we were before this illness. I have shifted my focus to healing emotionally too yk. Now that my feet are more grounded I can focus on myself.

My PT said something great the other day. "Let's not let your acute illness be chronic. " Let's all find that nice middle ground, our own new normal, and be grateful.

I wish u the best!


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,


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…

Shannon Shaw
Lauren Pettit
Jemma Bella
Jemma Bella
Jul 29, 2023

Hey Triona,

Thank you so much for bravely sharing your story, it really moved me and I felt quite emotional reading it! I am so sorry to hear how touch your journey with long covid as been. I can only imagine how awful it was to be admitted to hospital for struggling to breathe. I have had this sensation lots of times, only less severe, so it must have been extremely scary. And then to be told that ‘nothing is wrong’ must have also been so tough too! I am pleased to hear you have support around you but at the same time I can imagine that being a mother places an incomparable toll because you just want to be a mother and you aren’t able to do everything you want to for your daughters. But I am sure they understand and just like you are for them, they only want the best for you and just want you to get better! Which I know that you will!

I am so pleased that the injections the consultant gave you helped and that your symptoms slowly got better. But then to hear that you were reinfected honestly broke my heart! You certainly did not deserve that! However it’s good to hear you are experiencing good days and Triona, you got through your darkest of days twice over now, that’s got to count for something right? You should be so proud of how far you’ve come.

Your journey through this tough tough time demonstrates your inner strength and determination, you should honestly be so proud of that. I completely agree that it’s so hard to be positive and that’s okay! It’s okay to be angry and negative about it. But I know that overall your positive strength shines though and that’s the main thing! Thank you so much for sharing your story, my heart goes out to you but I also feel inspired by it, so thank you.

Sending so much love to Triona and wishing you all the best with you recovery. I really hope those nasty symptoms start to alleviate soon. Thank you for doing your best to stay hopeful, that’s all we can do! You aren’t alone with this and we will get through this. Keep in touch! Jemma ❤️

Also thank you to @Charlotte for your lovely reply to Triona too - I just love the long covid community we are all a part of ❤️


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.

Jemma Bella
Jemma Bella
Jemma Bella
Jul 17, 2023

Hello Tara, thank you so much for sharing this story with us. I am so sorry to hear that you have had long covid symptoms for so long, that is just awful. It is also awful that you have experienced different symptoms each time you got covid. That is great that you are part of clinical studies, thank you so much for taking part in them as these studies are what will ultimately help long covid sufferers! Sorry that you have the cyst, Sjorgens syndrome and MS symptoms, I imagine that must be really difficult for you. You are doing so well with pushing through work, I really hope you start to get some relief from your symptoms soon and sending lots of love ❤️


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.❤️

Claire B
Jack Smith
Sarah Wilson
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