Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Covid

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Covid lungs thread 18 weeks plus - thread 2

999 replies

LetsBeSensible · 23/09/2020 10:16

A thread for those with “long covid” experiencing symptoms for around six months now.

Some resources
UK sepsis trust vids m.youtube.com/playlist?list=PL16uJ-CyqxJIJpdLhf-Ccjhdvf4uNBIie
Physio for breathing pattern disorders www.physiotherapyforbpd.org.uk/
Dysautomnia webinar video vimeo.com/442593497?utm_campaign=5370367&utm_source=affiliate&utm_channel=affiliate&cjevent=38c74aa9fd7b11ea82d1002e0a180512
Articles, links, Resources c19recoveryawareness.com
Ricovr project videos

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

OP posts:
Thread gallery
20
AndsLee · 20/10/2020 15:00

Sorry, breathing through dust thing was then diagnosed in August, that read like I was diagnosed with the laryngeal obstruction in May.

Moodgie · 20/10/2020 16:14

@AndsLee were you told by the doctors about the allergy part or is this your speculation. The lower area of my throat is scratchy most of the time.

TiddleTaddleTat · 20/10/2020 17:58

Interesting link between MCAS and POTS www.potsuk.org/mcas2

Moodgie · 20/10/2020 18:57

@TiddleTaddleTat Would covid cause MCAS?

SunshineCake · 20/10/2020 19:18

Hello

I had covid March and April and haven't had a day since without chest discomfort. It isn't painful but is uncomfortable. Now i have had what feels like my outer side of my breasts being squeezed for a couple of days and today it is all across the front of them.

When I had to speak to the doctors receptionist about my son I asked about this and she said keep a diary. She didn't know what I should do.

I can live my life, I run a few times a week, but I can't deny I'm not scared about what damage I might have been left with after having coronavirus.

Does anyone have any advice please ?

Moodgie · 20/10/2020 19:30

www.testingforall.org/how-it-works/

Has anyone done an antibodies test from them?

TiddleTaddleTat · 20/10/2020 20:02

@Moodgie it has been touted as a theory, one of Gez Medingers more recent videos mentioned it - should be on YouTube , his channel is called Run DMC (for some reason...)

Whatnext2018 · 20/10/2020 20:36

@AndsLee I’m similar to you in that I (thankfully) haven’t had huge issues with fatigue, but have had lots of other symptoms which were frightening in the past. A 3 day soup fast I could do, would this be beneficial
do you think?

Whatnext2018 · 20/10/2020 20:38

I take an anti-histamine per day now, those of you taking one, do you find it makes a huge difference? It does help with my sneezing and runny nose, as they do when I’d normally get hayfever in April, but chest tightness and soreness, breathing through dust, some vibrations etc, still exist.

Moodgie · 20/10/2020 20:46

Thanks for replies everyone.
I feel currently worse, chest wise, anyone else was fine with their chest and got it back? I’m not coughing but want to cough something out that is constantly irritating my trachea area. Pain in upper chest on and off too. In August I felt like my airways are clear but not any more. I’ll add that since the start of September my lower throat felt scratchy for most of the time ams now it seems like it moved a bit lower down. Sorry, it’s difficult to describe.

MillStone · 21/10/2020 08:25

@TiddleTaddleTat thanks, that's an interesting article.

What I don't understand in regards to the MCAS / histamine hypothesis, is that people on the FB groups are reporting a big natural jump in health at around the 7-9 month mark. Some are even reporting 99% health.

Everyone here has also been steadily improving too.

Everything I have read regarding MCAS and histamine intolerance says it's a life long condition that is managed with medication and lifestyle changes.

If this is the case I wonder why we've slowly recovering and other have returned to full health after so long without making changes or medication.

TiddleTaddleTat · 21/10/2020 08:53

@MillStone I wonder if MCAS describes the mechanism but in post Covid perhaps it does resolve? I haven't seen so many reports of improvement at 7-9mos on the Facebook group, I've seen a few but I wonder about how after such a period there is a degree of self-management of symptoms. I'm nearing 8 months in and certain symptoms have been persistent, although improving very slowly.

Coffeeandtv2020 · 21/10/2020 09:17

@MillStone That’s promising to hear people are reporting a huge jump at 7-9 months 🙏 which Facebook group is it please? I need the positivity!

@Moodgie Sorry to hear the chest pain/tightness has come back, mine also has been recently, I’m wondering if it’s the colder, wetter weather 🤷🏻‍♀️I can’t think what else

Coffeeandtv2020 · 21/10/2020 09:18

I feel it at present, sat here having breakfast, a tightness/squeezing in my chest-0xugeb is 97 though so I’m not sure. When it comes on strongly, it’s quite scary and overwhelming.

Coffeeandtv2020 · 21/10/2020 09:19

*Oxygen

MillStone · 21/10/2020 09:23

@TiddleTaddleTat I know what you mean about self management. Also possibly acclimatising to aspects of the condition.

It's such a muddy picture. 4 recognised subtypes of Long Covid -- which may well overlap(?), general health, pre existing conditions etc etc.

@Coffeeandtv2020 There have been quite a few mentions of it on the Long Covid Support Group. I really hope so!

AndsLee · 21/10/2020 09:36

@Moodgie
I was told by the respiratory consultant about the "laryngeal obstruction", and she blamed the GERD for the cause of this. She suggested at that time that I stay on Omeprazole, I guess it wouldn't have crossed her mind that I could have low stomach acid.

My GP subsequently prescribed me antihistamines. He didn't say much about it apart from "will you take these?", and I asked why, and he said "just a hunch". A week later I found there was an improvement, and consulted him on coming off the Omeprazole, he agreed.

I have since sent him through the article about the Gut-BBB-Immune Axis, and hope to discuss this with him on Friday. I'm going to suggest the 3 day soup fast, and then if this doesn't work perhaps consider SSRIs...which I don't really want to take, but if needs must.

Last night, however, I must say I did have an episode of SOB, and my oxygen sats dipped to about 92.

AndsLee · 21/10/2020 09:37

@Moodgie - sorry, Thursday. My appointment with the GP is tomorrow...

Whatapickle78 · 21/10/2020 10:17

Hi everyone
@TiddleTaddleTat @Moodgie @AndsLee that’s really interesting about the MC theory. I’ve been reading through it all. I certainly have lots of those symptoms, and in particular, the trigger of an insect bite leapt out at me, as the day in June when my worst relapse began, I was bitten by some kind of flying beetle. I remember mentioning this to the doctor in a and e but she wasn’t fussed about it... I had shortness of breath, v high heart rate and blood pressure, chest pain and such bad shivering it almost felt like convulsions.

I’ve also had itchy skin coming and going, sneezing, sore eyes... Plus I’ve found taking an antihistamine at night has not only improved sleep but makes me feel better in the morning too.

But on the flip side, as you guys are saying, I have made huge improvements generally in the past month, and my main symptoms now are

  • Fatigue and muscle aches when done too much
  • need to sleep ALOT still going to bed at 9pm
  • inflamed lower back (specifically the SI joint) which gets very very bad still
  • swollen hands and sore joints in hands

I saw a rheumatologist on Monday who has put those symptoms down to possible ongoing reactive arthritis. He felt this would still clear within 12 months and was reassured that overall I was getting better.

My feeling is the lower back and hand issues are NOT improving, and I’m going to need some treatment for this... but no idea what! Steroids?

He also said my positive autoimmune result was most probably hypothyroidism, which I had anyway, and he said this would make me more vulnerable to severe reaction to Covid and potentially problems afterward.

I then relayed all this to my Dr friend who commented that ‘most rheumatologists are really weird’ and he should have just given me some steroids to try.

It’s such a murky picture isn’t it? Who really knows what on earth is going on with us all....

Xxx

Whatapickle78 · 21/10/2020 10:19

@AndsLee I’d be interested to hear what your GPs hunch was about the antihistamines. When I mentioned that I was taking them now to the rheumatologist, he looked momentarily much more interested and said ‘yes, well that may be very significant.’ (Generally, he seemed quite bored by everything else...)

TiddleTaddleTat · 21/10/2020 11:14

@AndsLee @Whatapickle78 that's so interesting about both the GP and rheumatologist's interest in antihistamines. I only have cetirizine and loratidine here to take, I wonder if it's worth me contacting my GP to ask about those on prescription. I suppose makes more sense to wait until after I've had the cardiology and endocrinology tests in a few weeks. Will be interested to see if the cardiologist picks up anything on this.
Wondering if I might intentionally make myself worse prior to the tilt table test - ie. stop with the extra fluids, electrolytes, compression stockings, low histamine diet etc so that I can get a true picture in the test. Bit nervous of that though.

Whatapickle78 · 21/10/2020 11:26

@TiddleTaddleTat I’ve only been taking 1 Acrivastine (Benadryl, the ones you take up to three times a day) when I go to bed as I want the drowsy side effect. No idea if this is actually enough to see a difference in other symptoms, but what I’ve noticed is I feel mentally clearer, more energetic, and less swollen hands, puffy face in the morning... but could just be placebo I guess.

I think cetirizine is the one they mention in that paper as potential treatment for MC problems? Be good to know what @AndsLee was prescribed.

Whatapickle78 · 21/10/2020 11:27

@TiddleTaddleTat I think that sounds really sensible RE: stopping everything before your test. I think I would do the same, though I agree, it must feel worrying. Hope your GP can advise.

AndsLee · 21/10/2020 11:56

@Whatapickle78 - It was Cetrizine...

Swipe left for the next trending thread