Cystic Fibrosis News Today Forums Forums COVID-19 and CF Do you have long Covid?

Tagged: , ,

  • Do you have long Covid?

    Posted by William on June 23, 2023 at 12:27 pm

    As we are in year four of the Coronavirus, millions have been infected with Covid-19. Not all, but many have experienced what is being called long Covid or post-Covid. For example, I have a family member that still experiences symptoms of Covid even though he was infected two years ago.

    Do you have long Covid? Do you know anyone that does? How has it affected your/their CF?

    William replied 11 months, 2 weeks ago 3 Members · 6 Replies
  • 6 Replies
  • gina-michele

    Member
    July 14, 2023 at 7:30 pm

    Yes, I do know someone with symptoms of long COVID.  A good friend of mine was positive for COVID-19 and virtually asymptomatic; they only knew they had COVID-19 after taking a test prior to seeing an elderly family member as a precaution.  They then began experiencing long COVID symptoms about three to four months after their COVID-19 had passed, and now they are struggling with long-term disordered smell and taste.  They recently began seeing a specialist for help and are hopeful that treatment will bring back their smell and taste.

    • William

      Moderator
      July 17, 2023 at 6:12 pm

      I wish them all of the luck in the world! It can be so scary as I have a cousin whose experience long covid. He seems to be doing better.

  • bronwyn

    Member
    July 20, 2023 at 1:10 am

    Hi William & Everyone,

    I have CF & after successfully avoiding getting Covid for 3 years, I got it at the end of January this year & despite starting an antiviral & antibiotics straight away, I rapidly deteriorated & became very ill from the symptoms of Covid & two secondary infections & was hospitalised for 19 days. After my discharge, I expected that I would need some time to fully recover like I’ve usually needed after my CF related admissions, but this recovery has been so different & much more difficult than I’ve experienced before. I did & still experience more breathlessness & severe fatigue & lethargy which can flatten me for a couple of days after physically exerting myself even slightly by walking even very short distances, doing the washing, carrying groceries etc, I developed a strange taste in my mouth, headaches, brain fog, occasional unexplained fevers, sore throat & the joint, muscle & bone pain & inflammatory response I could experience pre-Covid due to having an autoimmune disease & arthritis has been exacerbated & became so much more persistent & painful. My Rheumatologist said the Covid virus has caused an inflammatory “flare up” & how it will affect my arthritis & autoimmune issues long term is still unclear. On bad days it just feels like my whole body is inflammed & worn out which even sleeping 9 hours overnight doesn’t relieve at all. As these symptoms were still present after 3 months & are still now & after my medical team performed numerous blood tests & investigations to look for any other possible cause for my persistent & debilitating symptoms (all negative), I  have been diagnosed with Long Covid. My GP & CF team have been supportive & empathetic & we’ve tried adjusting both my daily CF Clearance treatment & exercise regime & exertion output numerous times to try & find the right balance of exercise & managing daily tasks & treatments without physically overdoing it to the point where my symptoms are worsened & I pay the price physically for days. The Australian Lung Foundation has released a booklet for patients with Long Covid which has been helpful & I’ve adopted many of the strategies that it suggests for managing & living with it which includes planning my week by ensuring I have “rest” days in between days that require more physically demanding tasks, to help minimise the impact & exacerbation of symptoms, prioritise tasks & do them in at a time in the day when my energy levels aren’t so depleted & pacing myself throughout the day & week & recognising & learning to stop as soon as I feel the increasing fatigue & aching coming on before it causes Post-exertion malaise (PEM). I’ve noticed that my brain fog becomes worse & other Covid like symptoms such as headaches, sore throat, brief mild fevers return if I do too much. Despite the challenges that living with CF brings, I was quite active physically & enjoyed doing so many things in my life before getting Covid. Long Covid has had a detrimental & debilitating impact on every area of my life & limited greatly what I can now do & other than the additional physical challenges it has presented, it has been mentally & emotionally very challenging also & it can be hard not to get disheartened, frustrated & depressed on some days. Living with CF can be hard but developing Long Covid as well has made things much harder, but I’m determined to do whatever I can to get through it even if means only taking small steps each day going forward. I know my recovery could be a long haul & take quite a long time, so I’m trying to let go of & accept what I can’t control about it & focus on what I can control ie eating a healthy diet, daily Mindfulness, getting adequate sleep, managing my energy levels, following professional advice, accessing counselling support & researching & learning as much as I can about the best ways to manage Long Covid in the short & long term. I look forward to a time in the future when I can hopefully say I’ve fully recovered from it. I feel for anyone who has or is experiencing Long Covid & wish them all the best for their ongoing recovery.

    Best wishes,

    Bronwyn

    • William

      Moderator
      July 25, 2023 at 11:10 am

      I wish you nothing but the best on your road to recovery from long covid. That sounds absolutely horrendous, but I’m not shocked that long covid has slowed you down in ways that CF never did. It’s cruel, but hopefully, a year from now, you’ll be much better.

      • bronwyn

        Member
        August 3, 2023 at 3:21 am

        Hi William,

        Thank you for your kind & empathetic response to my Long Covid experience & I greatly appreciate your good wishes for my ongoing recovery.

        Kind Regards,

        Bronwyn

      • William

        Moderator
        August 9, 2023 at 1:39 pm

        I can speak for everyone when I say we hope that you’re quickly on the mend.

Log in to reply.