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Covid Lungs week 8 plus plus

999 replies

AndsLee · 05/06/2020 18:23

Hope this has worked... Welcome all.

OP posts:
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MillStone · 12/06/2020 09:45

@BonnesVacances thanks really useful Smile

@Lightsabre so pleased you’re making progress.

I’m in the same position but I haven’t been walking much for the past 4 weeks. I’m doing a handful of very short walks.

The CT was ordered by the consultant but they had to apply for it. I didn’t think I’d get it.

Lightsabre · 12/06/2020 09:53

Hopefully @TiddleTaddleTat, it's not too late - you have recognised the issues and have slowed down. I too feel angry that there was so little info on this type of recovery and that normal rehab rules don't apply. I've been lucky in that I haven't had to return to work yet and doubt I'll be able to for a few weeks yet - I'm stronger but it's not a sustained strength that will enable me to be on my feet all day and talking a lot. I just hope my employers will understand as there's so little information out there about this.

BonnesVacances · 12/06/2020 10:34

Tiddletat I can understand your worry about having done irreversible harm. If I can just share my DD's story, it might give you some hope. Sorry it's so long!

DD initially had PVFS and although we thought we were managing it ok, it developed into ME. For DC it's diagnosed after 3 months of unrelenting fatigue, 6 months for adults. On reflection, she probably had it earlier and by the time she was too ill to go to school, it was already ME.

We immediately cut back on everything and prioritised rest and rest. She was housebound and pretty much bed bound as the level of activity she could sustain without payback was extremely low. Over the years though, the level of activity she can manage has very slowly increased. We would periodically try introducing something new to see if she could sustain it. Sometimes she could, sometimes it was too soon. But it's my belief that it's the recovery (ie. time) that leads to increased activity capability, not the other way round. Hope that makes sense.

After 2 years she was well enough to take an exercise test called a 2-day CPET. The test deliberately invokes the physiological response to exertion and tests it again the next day to measure its lasting effect. Day 1 showed that she had the functional capacity of a 90-year old woman. Day 2 showed that her functional capacity had worsened. This is an abnormal bodily response to exertion that only exists in ME. It's what is known as Post Exertional Malaise (PEM). It's not just feeling worse after exertion, but your body's energy function is actually impaired and your energy envelope has literally shrunk as a result of overdoing it on day 1.

So we concluded that every time DD ran her battery down to zero or beyond, it stressed her energy system and made it worse. It showed that stressing it didn't increase capacity, but reduced it. We thought that doing this continually would be putting pressure on it and it was never going to recover. So we carried on not stressing it, not running her battery down to zero, and always staying within her energy envelope. During this time, we were able to gently increase her activities, but always on the basis that it was time and rest that had contributed to the increased function, not the other way round.

At the end of last year, she repeated the CPET. This time, day 1 showed she had the functional capacity of an 80yo man. So she was still very debilitated. But day 2 showed that her functional capacity had improved. So her energy system was no longer failing when stressed. We firmly believe that because we left the energy system to recover without continually stressing it, it spontaneously reset itself and is now working properly.

However, she still has very poor functional capacity. But we know that she can now gradually safely build her stamina and fitness level because her body now has the correct response to a bit of pushing itself, rather than the opposite. But then the lockdown came and it's all come to a crashing halt and in fact has slipped back quite a bit! Sad But the main message is that leaving the energy system unbothered has seemed to help it recover and right itself. And is a good basis for why rest, rest and more rest is the key to recovery.

And if there's one other piece of advice I can give people in this situation it's to prioritise your mental health. Because the mechanisms to recover from depression are the opposite to PVFS and so it's a really difficult position to get out of once you're in it. That's hard at the moment in lockdown, but we prioritised social contact with DD's friends over school, and if it was ever a choice between a run out in the car or a shower, the change of scenery won every time.

BonnesVacances · 12/06/2020 10:50

Actually at the moment DD is much worse than normal and was in hospital overnight a few weeks ago for tests as she was feeling nauseous, too dizzy to stand and had chest pains. They couldn't find anything wrong and concluded it was a virus. She wasn't tested for covid as she wasn't showing any symptoms. And she still hasn't.

She's improved slightly but she still gets frequent bouts of dizziness and chest pains. Since then we've had numerous conversations with her GP, he's put her on a really high dose of lansoprazole which haven't made any difference, and ibuprofen in case it's costochondritis, which haven't helped either.

Literally none of us in the family have had any covid symptoms. We've been locked down since a week before the official one, but DH is a teacher and DS is in Y10 so both were potentially exposed before then.

But reading through this thread I can see these are quite common symptoms and medication for covid recovery. I'm not sure if they apply to general viral recovery though. I'll have to do some research.

Egghead68 · 12/06/2020 10:57

Day 83/84. I’ve been feeling a bit better in the last few days. Main symptoms now are elevated heart rate (better in the evening), breast,sinus, head and chest pain and intermittent fatigue. I’m managing to either walk 2 miles or do a yoga or Pilates class everyday plus 2-8 hours work without making myself worse (touch wood).

Egghead68 · 12/06/2020 11:04

@Lightsabre and @MillStone so glad you are showing some improvements.

@TheWooisStrong so gutted for you that your symptoms have returned. I wonder whether it’s worth trying to suppress your periods hormonally so the symptoms don’t return every month?

MillStone · 12/06/2020 11:15

@BonnesVacances

Your daughter sounds inspirational. What a thing to go through at her age. You’re all very strong Smile

@Egghead68 sounds like you’re making amazing progress!

MillStone · 12/06/2020 11:19

Ps interesting that your heart also calms down in the evening. I mentioned this a few days ago. I feel much much better in the evening. Morning = hit by a bus.

longshot · 12/06/2020 12:15

@BonnesVacances can I ask how old your DD is please? My DD is 8 and 12 weeks into this now....I am a bit worried it's turning long term but I guess only time will tell. Most days she is up and about but any exertion makes her unwell. We are just resting...

@TheWooisStrong I am the same pre period...I have another few days of being OK before pre period terror days hit again.

I have mostly been OK for 2.5 weeks here, fatigued, headaches and the odd weird muscle twitches but otherwise pretty OK. I have to nap and meditate a lot! Most other symtoms have now gone except sometimes motion sickness if I look at screens etc. I still can't work much but have 2 DCs to care for which is work enough!

@Egghead68 I have been wondering about some hormonal contraception for a bit. I HATE taking stuff but if my next period / PMT is as bad as last month I would consider it.

Also I am taking Evening Primrose this month which has helped with the boob pains I was getting (i think).

Copperas · 12/06/2020 12:34

Sorry to butt in with a question about antibody tests.
I have been reading these threads since March, and have found them really helpful in supporting my son, who got Covid 19 about 16 March. He found great comfort from hearing that other people have had the same odd 'unofficial' symptoms and side effects. He still has so many after all this time, and although back at work he is too exhausted to do anything else, regularly gets strange chest and arm/leg pains etc.

As an NHS worker he has just had an antibody test and it has come back negative. We can't believe it.

Does anybody know whether length of time since infection has any effect on accuracy? I heard that tests taken at about 40 days on people who had previously tested positive for Covid were accurate. He was at 83 days when antibody-tested, and had never had an infection test (as we all know they weren't offered to people told by 111/999 to stay at home).

We would be very grateful for any advice - or even just an assurance that he is not a malingerer or making it up!

Egghead68 · 12/06/2020 12:37

Glad you are doing better @longshot but sorry about your DD. Good idea about the evening primrose oil - I used to take that for PMT in my 20s.

@Millstone - ah yes. I couldn’t remember who else it was who was better in the evening. It is a dramatic difference (resting heart rate around 90-108 in the morning and 65-80 in the evening). Maybe it’s just normal for heart rate to fall during the day? Maybe it’s because I take my asthma meds in the morning? I’m not sure.

BonnesVacances · 12/06/2020 12:39

@longshot She was 14 when she got ill, now 18. It's the most common age range for children, but I do know of much younger DC at primary school who have it.

DD had to start taking the combined pill to help her manage her periods. The pre period stage used to totally wipe her out and exacerbate all her ME symptoms. Though she's suffered from the side effects of low mood, so we're trying a different type now. But it definitely helped with the other symptoms. She takes it continuously without a break for a period.

Lightsabre · 12/06/2020 12:41

@Copperas, sorry to hear your son is suffering still. Unfortunately there only seem to be a few people who have posted with positive antibody test results. Some of the private tests have been withdrawn as they were found to be unreliable. GP's are now rolling out the 'officialily approved' Roche tests but there is debate about whether these are still effectively tested long after symptoms start. There are studies coming out that say people are fighting off the virus with T-cells rather than antibodies. One poster had her whole family with symptoms but only 2 of them had a positive antibody test.

Egghead68 · 12/06/2020 12:44

@Copperas this thread has lots of information about antibody testing:

www.mumsnet.com/Talk/coronavirus/3918865-Antibody-testing-thread-2

However the basic message is that the IgG antibody tests are specific but not sensitive, I.e. positive tests reliably tell you you have been exposed to covid but negative ones do not reliably tell you you have not. Perhaps around 20% of positive cases give a false negative. Likely reasons are that (a) the IgG antibody response is short-lived in some people and (b) some people don’t have an IgG response at all and rely on t-cells to fight the virus.
It can be disheartening to get a negative test result when you feel sure you have had it as you can feel like a fraud/hypochondriac. However, if it walks like a duck and talks like a duck it is probably a duck, despite the test results.

Diseased · 12/06/2020 12:44

@Copperas

Sounds like it was probably not Covid that your son had but some other virus

Egghead68 · 12/06/2020 12:45

Cross-posted with Lightsabre!

Egghead68 · 12/06/2020 12:46

@Diseased that’s really not correct.

MummyPop00 · 12/06/2020 12:46

Day 75.

Ok as per my previous posts, still have ongoing wheezing episodes (though not as bad). My Pleurisy seems to have gone at long last.

X-ray last week showed everything normal.

Asked for GP phone consultation as follow up.

GP says body just needs to fight it off & repair. Told him I was frustrated at not being able to cycle/do cardio he told me just to do what I want & if there are any adverse reactions, to diarise them. If no improvement in the medium term, to contact him back to be referred to a specialist Confused

Egghead68 · 12/06/2020 12:47

But @diseased thank you for coming into our thread to make your first ever post on MN.

Diseased · 12/06/2020 12:49

I have been here years, thanks, regular name changer and your point is.................

Copperas · 12/06/2020 12:49

Thank you so much for the help - will be off to read that thread now.

These threads have been a lifeline.

Egghead68 · 12/06/2020 12:50

@MummyPop00 I am glad your pleurisy has gone. I don’t think the advice to do the cardio you want and just document adverse reactions is good. In my experience cardio can lead to a relapse that lasts weeks. Personally I would take it very slowly and cautiously. I have given up on cardio for the time-being (was very fit pre covid).

MummyPop00 · 12/06/2020 13:36

Yes that’s my gut instinct too Egghead. I actually got out on the bike a mere 10 days after falling ill as I believed all the stories about it being a week or two thing!

Paid for that by bringing on pleurisy, which took 8 weeks to shift.

I think I’ll stick to gentler country walks or very gentle rides with the kids just to ‘keep my hand in’ so to speak!

It is very frustrating though, as like yourself I was pretty fit pre Covid. Then again, that fitness in the lungs may have helped prevent this thing from being even worse I guess!

ProfInkly · 12/06/2020 14:04

Hi all. I've been dipping in and out of these threads so sorry if this has already been asked. My daughter (3) and I are on week 12(ish). Both still have a dry cough and tight chest, and tiredness, although it is much better than it was. Week 6 to 8 we had a particularly bad flare up which was worse than the initial illness. Spoke to GP today and she recons we have post viral fatigue and has prescribed an inhaler. Has anyone else used one and has it helped? She said if we are no better in a fortnight then a chest xray will be needed.

Lightsabre · 12/06/2020 14:58

@ProfInkly, I've had a blue inhaler and haven't found it helpful but what works for one might not work for another so it's worth a try.

In other news my venous antibody test was negative unsurprisingly. Worried now the HP will put the shortness of breath down to anxiety. Awaiting chest and other blood test results.