Reaching out

Nelly706
Nelly706 Online Community Member Posts: 1 Listener
in Start here and say hello!

Hi, I was diagnosed with COVID October 2020 and within weeks of the effects staying with me, got the dreaded Long COVID diagnosis. Here I am 5 1/2 years later, still struggling daily and feeling like I'm getting worse, not better. No taste. No smell. Chronic aches and pains. SOB. Now being treated for COPD. Struggling with reactions to perfumes, strong cleaning products, spices etc the list is endless. Eyes water, struggle more with breathing and go dizzy when trying to walk ... The list goes on and on … not forgetting the dreaded brain fog!

Can anyone relate to me and found anything that has worked for them please?

I've done the long COVID clinic, brain training. Waiting on more tests and referrals to come through via OT.

Thank you for reading.

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Comments

  • Kimi87
    Kimi87 Online Community Member Posts: 8,414 Championing

    I'm going to recommend The ME Association for support and advice, ME and LC aren't exactly the same but there is a great deal of overlap and lots of the existing management advice for ME applies to LC.

    https://meassociation.org.uk/

    They also have a local support group finder if you feel that might be of benefit to you.

    https://meassociation.org.uk/local-support-groups/

  • MissMarple
    MissMarple Online Community Member Posts: 335 Empowering

    Hello @Nelly706

    I also got Covid in 2020 which set off a plethora of symptoms and health conditions. What I found useful:

    As @Kimi87 suggested, look into ME if you haven't done so yet. I can recommend the book It's Mitochondria, Not Hypochondria by Dr Sarah Myhill. It's a brick but may give you some ideas and a direction.

    Have you been tested for POTS? The dizziness when walking sounds like a suspect. You can do an Active Stand Test at home. I'm suggesting this because there are lots of management techniques for POTS that might help with some of your symptoms.

    Learning to pace was essential for me. I used to have awful crashes and I was getting worse and worse. Pacing, staying within my energy limits, helped to stabilise the rollercoaster of energy levels. To me, pacing meant major changes like moving home to a place without stairs.

    I wish I could offer a magic solution, but I am still struggling myself. But certain symptoms did disappear or ease with time/management. I think it's worth experimenting with different things however ridiculous they may sound (as long as they are safe).

  • Mary_Scope
    Mary_Scope Posts: 3,992 Scope Online Community Children and Family Specialists

    Hi @Nelly706 and a warm welcome to the community from me!

    I see you've already had some good information and support from some of our lovely members so I won't add anything new but it's lovely to have you here and I hope you enjoy your time on the community😊

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