Damon1864Volunteer

Hi TumbleDrum, have you spoken to your GP, if not I would if I were you. Sorry I'm I couldn't help any more than this I hope you get it sorted. Please keep posting and let us know how you get on. Have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

TumbleDrum in reply to Damon1864

Thanks Bernadette and Jack! I initially tried to have the conversation with my GP in December, but he dismissed all as anxiety and residual post-COVID bronchitus. Said it should resolve shortly - so I gave it a month. When nothing got better, I was at lease able to get an appointment with a pulmonologist who made the 'asthma-like symptoms' diagnosis but hasn't really said much else. Luckily, I am supposed to see another pulmonologist here in two weeks, one who is a little more problem solving oriented. Since there's no official type of diagnosis, it's hard to know how to proceed. I have a feeling there will be more tests and a more significant work up at my next appointment.

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Caspiana

Hi TumbleDrum. 👋😊

Nowadays we know more about the long term effects of Covid. Without a doubt for some it certainly lingers longer than others. I don't know when you had your bout of Covid but I am pretty certain you are now suffering the aftermath. If you are well enough I would suggest exercise but only of you are now symptom free, no fever, fatigue or shortness of breath. You should be at least ten days without Covid symptoms and an "okay" from your doctor. Being active can help you recover better. You must start slowly though .

Unfortunately depending on the severity of your infection from Covid it could take a long time to feel better. The average is six to eight weeks. For some it is a permanent thing. I would say please tell your doctor how you feel. They may be able to point you in the direction of pulmonary rehabilitation to aid in your recovery.

Very best wishes,

Cas xx 🌿🍀🌿

TumbleDrum in reply to Caspiana

Hi and thanks for the message. I had it in late October, so it's definitely the aftermath of everything. Or its Long COVID - it doesn't seem like we quite know what that means and what it entails. I'm hoping its not permanent and that recovery is just slow, so I am trying to make the most of things and rehab as effectively as I can. I had the 'okay' from my doc in December, but that turned out not to be as much of a go ahead as we had thought.

In truth, I have fared better than some and try to remain thankful for that. I also pray for those who are struggling more than I am.

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KittyKitten

I have never had covid, but I have a weird sensation where it feels like no air is going in when I am breathing. Makes me feel like I am being smothered or something. But my oxygen is good as well (between 93-97 according to fitbit). I thought maybe it was due to a B12 deficiency. I think delayed treatment may have caused this symptom to become permanent for me. I'm also looking into other reasons for my SOB just incase I am missing something.

But maybe you can look into a b12 deficiency as well if you haven't already? You can still be symptomatic even if your serum levels are normal too. Make sure you aren't taking b12 supplements if you decide to get your bloods tested! I remember someone saying there could be a connection with b12 and covid too. Not too sure on the accuracy of that though because I haven't looked into it myself. But something to think about! Also, if you ever find answers that are different from this, I would love to know too!

TumbleDrum in reply to KittyKitten

Oh thanks so much! I am taking a B-Complex vitamin right now, so hopefully those levels aren’t low. And yea, the breathing air bud not feeling satisfied part is such an odd feeling. I also have times when my chest and my lungs just feel heavy - like it’s more work to move everything to breathe. Usually, my breathing muscles feel tired at that point

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KittyKitten in reply to TumbleDrum

If you are taking a b-complex then the results can be skewed if you do get a b12 test. It can take months for your b12 to go back to a normal baseline before you can get an accurate test. Have you been taking them for a long time? I took b12 supplements and it made my level look normal, folic acid made it look like I had no anemia (I believe). I ended up needing injections to solve a lot of my symptoms. But left with this breathing issue. Do you have any other symptoms?

But yes, my chest feels the same, very heavy. Like gravity is turned up and it is harder to lift. And when I do take a deep breath, I feel like I'm not really breathing in oxygen, even though I am.

Are you doing any further testing for anything else??

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TumbleDrum in reply to KittyKitten

I haven’t really found any testing to do yet. I am meeting with a new lung doc on April 4 and he is more problem solving oriented. My guess is that there is either some inflammation from the virus, some remodeling, or some small airway damage. But I hope he can point me toward some things and I also want to ask him about some higher doses of inhaled steroids. Some of them have shown some small ability to reverse airway remodeling. The other thought is that it could be a nerve issue too. But so far, I haven’t gotten any good answers.

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natswright

In my early recovery, my lungs spasmed, and any activity made me feel breathless. Even 6 months on, If I go for a 20 minute walk, I get very mildly breathless for an hour afterwards. In fact I like the way you describe it, because it is more like a breath in that is not quite satisfying. It seems commonplace with those recovering from covid. My physio is unsure why this happens.

Some theories are that the muscles are less efficient at taking in O2, so when you use them, even when resting, they draw more oxygen. So like a light dimming, when more are loaded onto a battery, this may be what is happening.

It improves with time. Slowly, muscles get more efficient, so the feeling diminishes.

I remember when still in hospital, just digesting food had me mildly breathless. That energy sap on my body was enough to make me have the feeling.

TumbleDrum in reply to natswright

Oh wow, that is good to hear. I can't really tell what the triggers might be, but it is really unsettling to experience and still happens to me quite frequently. I hope there's improvement Also, do you tend to notice any panic symptoms when that happens? Sometimes, its like my body gets a shot of adrenaline or something when it is really bad and I have to walk a little bit.

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natswright in reply to TumbleDrum

During the early months of recovery, it triggered my flight or fight response, and I often felt worse. This stopped happening in the last few months, as I started to feel better.

So yes, you will feel some panic when this happens!

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TumbleDrum in reply to natswright

Well, that is good to know. It's kind of had me out of my mind at times - I've never had to fight so much despair in my life. And my O2 sats are fine, so it's not like I would even qualify for oxygen at the moment either. Nor would it really help if we are actually getting enough oxygen

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