Long Covid – Stronger Together

gretch

If there is anyone passing by the forum who is experiencing Long Covid or is the friend, family member or carer of someone who is, please know you are welcome here.

This is a safe place to join or start conversations with people who understand what it is like to get sick and not get better. This is also a community that understands how hard it is to navigate the world with a complex, chronic illness and have come together to share our collective knowledge and support each other through.

Because Long Covid and ME/CFS have common abnormalities and symptoms and most likely similar underlying biology, researchers and advocates are working together to find effective diagnostic tests as well as work towards treatment and management options for both conditions.

So not only are we in this together, we are stronger together.

In case you didn’t come across the ME/CFS and Long Covid Emerge page you can click here.

If you would like to introduce yourself you can do so by clicking here.

Dot

@gretch I am so glad this topic has been started.
I hope some people struggling with Long Covid find us and find understanding and support here.

Lau_EA_Aus

@Dot thank you for commenting and bringing this post back in view. I have spoken to quite a few people with Long COVID and I hope they will join us

dee

Same, I am also glad this topic is here and hope people feel they can find understanding here
(And for all I know there is a possibility that what I have is long covid)

Brent

Hi all. I’ve had long Covid since march 2022. Just wondering how others are going? Have u found any particular treatment to help? I’ve seen a naturopath and had varying result… Thanks!

gretch

Hi @Brent welcome to the forum.

I whole heartedly wish there was treatment options we could point you in the direction of, at the moment, management options are the best way to reduce symptoms. You will find a lot of great threads on things that may have helped and always here for support and solidarity.

I know it can be a bit overwhelming but two great places to start for info on management strategies that are helpful for both ME/CFS and Long Covid are the Emerge Page on Stop Rest Pace and the Me Action Network Pacing Guide.

Brent

Thanks Gretch. I'll check those links out...

Does anyone have their own special management/treatment plan for long covid? What makes u feel better and what makes u feel worse?

I like heaps of sleep currently and small stints outside. I can push thru the pain on some activities but I find I go back into the covid hole if I do. It's a balancing act for sure.

Did anyone else here have a mild covid infection initially, which subsequently lead to this long covid/post viral fatigue??

Cheers

Brent

dee

@Brent sorry you are going through this.
as far as I know I haven't had Covid, but regarding pushing yourself and getting sicker afterwards, that sounds like the PEM I experience. the advice I've heard (from all sources I've come across) and found useful about it, is to not push yourself. It's really hard. But it's short term pain for long term gain.
I heard a similar thing from a long covid recovery video online.
I've found I've had to really readjust expectations. and instead of pushing I've found things to do that are relaxing for me. I find funny things are great for enjoyment, and the things that especially make tomorrow easier are things like sleep, deep breathing, mindfulness, self compassion. A good experienced integrative doctor and nutritionist have helped me do tests and find out what adjustments were important for my diet too, to give my body a good fighting chance.

Dot

@Brent Hi Brent. Such a good question. Apparently there are something like a thousand research papers on Long Covid coming out every month. But nothing useful to manage it, as far as I have heard.

Given that it does look to be the same, or similar, to ME/CFS, I back what Dee wrote. Lots of rest and recovery and work really hard to avoid ever pushing through.
All that 'soldier on' and 'just get on with it' is not only counter-productive, it is the worst thing we can do.
Think what you can do and halve it, think how long it will take and double it.

You might find it useful to read 'spoon theory' https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

It seems too hard, but it is the thing that is most likely to make the difference and give you a much more active future, maybe even full recovery.

emsarah

@Brent I agree with Dot and Dee. When I had post viral fatigue (from another virus not covid) prior to it becoming ME/CFS, the things I wish I had been told right away were:

Understand Post Exertional Malaise (PEM) also called Post Exertional Symptom Exacerbation (PESE). Understand what activities trigger it and what symptoms look like for you.

Understand what pacing is, and start doing it right away. Pushing through pain for fatigue will make us worse, but breaking things up into small chunks with rest in between means we can spread out the energy we have effectively.

ME Awareness NZ pacing guide (fantastic resource)

Other than that, management for ME/CFS is based on symptom management. Things like managing pain, improving sleep, managing orthostatic intolerance. This is a good resource that outlines things that can be tried for each symptom. You can skip to the Management Approach table in the contents. It's a good one to share with your GP.

Definitely pace yourself reading these things read a short section, have a break, and rest your brain, then do a little more if you are able. Cognitive energy takes a lot out of us too!