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The Long Covid Collective

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Hi everyone 👋 I'm Sophie and I'm 39. I've had Long Covid since August 2022. Before that I'd had Covid 5 times and had also been vaccinated. The last tike that I had Covid I was virtually asymptomatic but a heavy feeling like walking through cotton wool remained for a long time after. A couple of months later I started getting dizzy when standing but assumed I was anemic as have been before. But then the heart palpitations started and I was struggling to walk and suddenly felt really generally unwell when standing. After a few tests including a tilt test (horreandous for anyone with any sort of orthostatic intollerance or dysautonomia), I was diagnosed with POTS and Long Covid. The NHS prescribed me with beta blockers, salt and rest. But the beta blockers only masked the problem by temporarily lowering my soaring heart rate and the salt didn't seem to help. I began to feel worse and the chronic fatigue set in and what I can only describe as a heavy feeling in my chest when standing. I could barely walk or get out of bed and certainly couldn't look after my 2 young children. My husband had to take a long time off work to look after us all. Eventually I heard about a private clinic called Breakspear Medical in Hertfordshire. They specialise in chronic illnesses like ME, Lime Disease, and Long Covid etc. They look at them wholistically with a focus on environmental medicine. After a whole suite of tests there I was found to have reactivated versions of Epstein-Barr and Roseola viruses which were causing an autoimmune response in my body. I'm now coming to the end of 3 months of anti-virals and am on what feels like 50,000 supplements (some anti-viral, some to support my immune system, some to support my liver which has been struggling). I feel miles better and can now even run in the park with my kids. But any sort of stress or lack of sleep brings on a crash. I still cant raise my arms above my head without my heartrate soaring and feeling like I'm going to black out. I do wonder whether I'll ever feel back to normal. But I'm so thankful for finding Breakspear Medical who delved deeper when the NHS just said I've got POTS but didn't look into why. I've learned that often Long Covid isn't an illness in itself (which is why it presents differently for different people) but causes other illnesses to develop or re-emerge. I'm also thankful for my husband who didn't dismiss me when I said "I just don't feel right" but couldnt explain why. Im also thankful for online communities such as this one who don't make me feel like its all in my head. I lose count of the number of times that people have said "but you don't look ill" or "last week you went out for dinner, why cant you this week?".

Jemma Bella
Jemma Bella
Jemma Bella
Sep 05, 2023

Hey Sophie,

Thank you so so much for sharing your experiences. I am so sorry you have gone through all of this, it must have been a whirlwind, especially with 2 children. I have never heard someone describe the feeling of walking through cotton wool, but that is such a great description for how I can feel at times too.

I am so pleased that you were able to get a diagnosis for POTS and long covid, but it must have been incredibly frustrating to not have seen improvements with the beta blockers and also for your symptoms to get worse. How awful.

That is such great news about the Breakspear Medical, I have not heard of them but I just think it is fantastic they were able to help in so many different ways. You seem so so knowledgable about this, so thank you so much for sharing it! I am honestly so pleased that you are now feeling a lot better and can play in the park with your children, how sweet. Also its fantastic that your Husband is so supportive, I am so happy that is the case but I am so sorry you’re still struggling with some of your symptoms though.

You are so right about being grateful for these online communities - I genuinely do not know where I would be without them! I am so grateful for everyone involved, I think I would have gone crazy if not…I just felt so alone and confused. So hearing stories, such as yours, helps so much (although I wish we all did not have to go through all this!). Thank you again Sophie for sharing all this and also mentioning about the Epstein-Barr Virus, it is so interesting and I definitely believe I should research more into it.

Sending so much love and really hope you continue to see improvements and continue to play in the park with your children - that is just so wonderful! ❤️

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