Covid lungs long term. 18+ weeks support thread

[LetsBeSensible]

For anyone struggling with getting over covid, relapses and the like.

Started with the “covid lungs...” threads in March 2020, before “long haul covid” was recognized. New joiners welcome.

That is an interesting question Moodgie

We have not had any thunder but it is very muggy and warm here. I just walked down to the shop and was very much struggling on the way back up the road. I was almost going to call DD and ask her to come and help me! I have not done the walk for a month as it involves an uphill slope and I was exhausted last time, but I thought my respiratory fitness had improved the last couple of weeks. But I am still, two hours later, feeling the effects. Chest pain (usual) and shortness of breath (not usual now). I had not considered the effects of the weather.

@pasinphoebe I think my acid reflux issues have certainly been exacerbated by COVID. I got heartburn before, which was treatable with a swig of Gaviscon, but now I experience the "breathing through dust" sensation every single day. I think the Omeprazole makes things more "dry" i.e. no acid (obvs) but comes with other issues. I am not sure if my burning skin is a side effect (I actually don't think so, I think it's an auto immune issue). I seem to have moments of relief, which I assume wouldn't happen if it was a side effect of the drug.

So my period this month - it wasn't as plain sailing as last month. Definitely some of the old symptoms popped up this time, but mostly not as intense as before - except the burning skin. The burning skin is really doing my heed in!!!

Am struggling today. I've had shortness of breath for the past 1.5 weeks after months of sternum pain and gastritis issues. I don't have it on exertion, more just a standing around sensation.

My oxygen saturation is okay - 97-99, I've had a clear chest X-ray, and ecg, blood tests clear for clots...but still I feel like I'm not breathing. Taking a deep breath is a challenge - all feels tight - and I feel like I keep gasping/sighing for breath. I've tried some diazepam in case it's anxiety related but that hasn't helped.

Does this fit with what other people have? It's a new symptom for me, I wasn't short of breath in March/April, then it was burning lungs and sternum pain. I don't know what help to ask for from the GP when the main test results are clear. I'm getting very tired of all this now...esp as I don't know if it was ever covid that I had and could this all be a different undiagnosed problem?

Oh @givemeanother so sorry to hear you’re having a relapse.
This is very similar to me. I haven’t had any checks done as I’d kind of assumed that nothing could be done but it’s the same feeling.
Not being able to get a big deep lungful in. Almost wheezy at times. I sort of feel like I can’t breathe but I know I’m ok as I can talk and sleep but it’s not a pleasant feeling - and of course it’s catch 22 as it makes you feel rather anxious which prob doesn’t help.
I’m sorry this doesn’t help you, this is I think perhaps day 10 of a relapse when I haven’t really had to deal with this symptom before. Sending supportive thoughts to you. All I do is take it very easy and look for distractions eg an audiobook, watching the kids play outside
Also @oscarandelliesdad I’m not sure when you were due back to work but hope you’re doing ok?

Hi
This extremely hot weather has seen me have trouble with my breathing again. Not sure if it is a relapse or a symptom of my heart problem. I also have the problem of waking up slowly where I used to be able to jump out of bed. However I am still operating as normal as I can in the heat and thunder storms Still getting very tired and doing some intense planning for school this afternoon I got a headache and my vision started to blur just like the early days of recovery. But this could be the heat. Just want to feel 100% and be able to do things without thinking. On the plus side the cough has become minimal to the point I think I have barely coughed in three days. after five months
Thinking of you all and pleased to see some improvements are starting to become more evident

@Meercatmama I hope that your symptoms improve again soon. Although it's nice to get a bit of sunshine I don't think this heat has helped any of us. Although weirdly my breathing and fatigue levels haven't been too badly affected, my heart rate has been much higher and my sleep has been appalling. Hopefully we'll all sleep better tonight.

@pasinphoebe and @givemeanother sorry you're both struggling too, and yes similar breathing issues here. Maybe you should push for a respiratory referral? I finally got one in a roundabout way because the rheumatologist I was referred to advised it.

Glad to see the end of the heat here too. I agree, it hasn't helped recovery. Sitting in the sun for more than a short while seems to make me worse actually. Being cold really seems to help!

Absolutely noticed a sensitivity to heat. Out of curiousity, those of you that tested positive in ANA bloods, what's happening now for you?

@AndsLee I tested weak positive. I had further blood tests specific to certain conditions (not sure what though) which all came back clear. I have coeliacs, and about 10 years ago developed minor symptoms of autoimmune issues (dry eyes and mouth, hair loss, aching joints) but bloods always clear. In light of the positive ANA and my medical history I've been prescribed hydroxychloroquine but the rheumatologist made it clear that it's more likely to be long Covid than a new autoimmune condition. But worth a shot as there are minimal side effects.

Have you been tested yet?

Can anyone explain what an ANA blood test is please?

@fedupofbed interesting that you are coeliac , so am I.
I also get occasional flare ups of psoriasis that can be severe and whole-body.
Should I ask GP for ANA blood test? Don't think this was covered last time.

www.healthline.com/health/antinuclear-antibody-panel#procedure

@fedupofbed Not yet, but received word this morning I'll be called in soon...

I just received an update from one of who knows how many covid things I’ve signed up for. Not watched it yet but may be of use to those struggling with fatigue-

The series has been developed by the AWRC at Sheffield Hallam University in partnership with the CRESTA clinic at Newcastle Hospitals Foundation Trust, Newcastle University, and University of Northumbria. The work is part of the RICOVR unit at the AWRC (www.awrc.co.uk).

The video's cover the following topics:

Video 1 - An introduction to the CRESTA team and fatigue
Video 2 - Managing your energy and daily activity
Video 3 - Looking after yourself during your recovery
Video 4: - Activity and fatigue
Video 5: - Question & Answer session on common issues for Covid-19 recovery

We suggest you start with Video 1 and then work through the series in order, ending with the Q&A. Please take breaks in between each video and pace yourself in terms of how much you watch in one go.

Thank you @AndsLee. The reason I ask is that I was diagnosed with a dry eye condition a couple of years ago (Blepharitis) and my hair also started thinning at the same time. I didn't connect the two and GP put it down to menopause. I don't know whether I've had this blood test as part of a full blood count so will check.

@Lightsabre that's really similar to what happened to me, and could well have been perimenopausal, but with the aching joints as well they thought it might be sjogrens. Either way, it didn't really have a huge impact on my health so I was never too concerned.

@TiddleTaddleTat that is interesting. I was never offered this test - I had to ask for it. I have a theory that people with long tail symptoms have an over zealous immune system. It fits in with my medical history and also that I rarely even got a cold previously. It would be interesting to find out how many of us have either an existing autoimmune disorder, a family history, or allergies/atopic conditions.

@LetsBeSensible thank you so much for the videos - they look really helpful. I will take a look when I have more energy 😆.

@givemeanother I have had exactly the same thing- breathlessness was not an issue for me, but this last couple of weeks have been awful. My cough is long gone and I had a clear chest X-ray. I am still fighting a stomach bug which has dragged on presumably because my immune system is going crazy (no temperature now) and it seems to have triggered it.

I found these great short videos from the sepsis trust for long Covid sufferers. These are very clinical which I prefer- I like to understand what might be happening. They have titles like Will I get better and what is causing my breathlessness

m.youtube.com/user/TheUKSepsisTrust

Hello all, hope you’re all well. @LetsBeSensible thanks those movies are super — especially 3 and 4. Need to rewatch them a few times.

@MillStone agreed thank you @LetsBeSensible

@Criticallythinking thanks your link was great too.

@Millstone how are you?? I have been doing the chest muscle exercises you put up and they have helped my chest and breathing Lots - thank you.

Great videos, thanks for sharing.

Didn’t even watch those videos yet, needed some shopping so was busy trying not to collapse/throw up in the supermarket!
Yes, if anyone needs to watch, it’s me....I was thinking of you @fedupofbed as you've been actually laid low with fatigue

@Kitcat122 pleased they're working for you The shoulder rotation things feel especially nice in the shower!

Thanks for asking. I'm making slow and steady progress but I'm still getting sporadic symptoms and nonsensical episodes of breathlessness.

I get out for a gentle 10-15 minute walk each morning and do some light arm and leg weights at lunch, but 15 minutes of yoga in the afternoon is my biggest help. I'm managing about 2 hours of light computer work each day too.

Overall feeling positive and dreaming of the days I can cycle, run and go for long walks at the drop of a hat.

How are you getting on, did you start you walks again?

Thank you @LetsBeSensible and also @Criticallythinking . There's been so much useful info posted on this thread. I always read everything but sometimes it takes me a while to - I kind of have to be in the right mood to be able to face things and process info if that makes sense. As my physical strength grows I'm noticing how mentally fragile I still am.

@MillStone glad that things are still improving. I've just started being able to do some very gentle yoga too. And you've reminded me to do the breathing exercises again!