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999 replies

WorriesomeDad · 21/04/2020 00:34

Thread for continuing long-term Coronavirus support

OP posts:
OneDayAtATime123 · 21/04/2020 13:24

@Dorual
Check this link on how they reduced the cytokines and saved the patient with drugs and high dose Vitamin C
www.richmond.com/special-report/coronavirus/a-richmond-doctor-s-dramatic-story-of-covid-19-infection-hospitalization-and-survival/article_750722ad-7918-544d-bc4d-798d456033f6.html

Dorual · 21/04/2020 13:28

@onedayatatime123

I can't open the link. What day was the patient on? I'm still scared about having a cytokine storm or getting pneumonia and I'm on day 21!

OneDayAtATime123 · 21/04/2020 13:33

Reposting
LINK
@Dorual: It was probably after 10 days or so that he started feeling very ill.

Egghead68 · 21/04/2020 13:54

Thank you for the new thread @WorriesomeDad.

Day 31/32 and feeling a bit weak and fatigued but otherwise good.Managed 5 minutes on the exercise bike at level 3. I think this is the 4th improving/good day in a row. Fingers crossed I don’t relapse again.

Egghead68 · 21/04/2020 14:00

I should say I am in the extremely vulnerable/shielded group like @Schuyler and some others on these threads. If we can improve, other people can too.

Egghead68 · 21/04/2020 14:01

@Dorual everything I have read suggests you are out of the danger zone for a cytokine storm.

WanderingLost167 · 21/04/2020 14:03

I just rang the Gp because I've had this for a month and still got recurring fever and chest pains. She said it sounded like classic Covid and I may have got a secondary infection. She's prescribed antibiotics.

But weird to hear someone else confirm what I suspected.

She also asked if I self isolated, the thing is given the two main symptoms we were told to look for (cough and high fever) weren't my symptoms I didn't think I had it until more research came out and clarified that what I was exhibiting were also Covid symptoms.

So I got it before lock down started and only realised it was possibly Covid two weeks in, after having my children move between me and my ex husband. They have also had limited symptoms.

Egghead68 · 21/04/2020 14:08

Sorry you are suffering too @WanderingLost167. I think symptoms can last a long time with or without a secondary infection. I hope the antibiotics help you.

TheDrsWife46 · 21/04/2020 14:09

Hi everyone, thanks for tagging me in on this thread. Yesterday I went to A&E and had a bladder scan, bloods, neurological reflex tests, and heart/lungs listened to etc. They cannot understand why im getting such bad neurological symptoms other than “post viral myelinitis” this absolutely sent me spiralling into despair. My GP called me as I left hospital as she was going to get me to come to the surgery carpark for an examination. I told her that I cant cope with the symptoms at night, that im not sleeping and that when the buzzing/tremors etc start that its giving me a panic attack as its in the vertebrate of my neck now and distressing. She prescribed me some sleeping tablets but warned they were a short term solution.

The pharmacy was shut and i couldnt access them and so after consulting a nurse friend I opted to take half a diazepam that I had from a flight in July knowing my lungs/sats had been checked.

The tablet relaxed me and i slept 11-2,2-4 and dozed 4-7 but the sensations were all still there in my sleep. I was acutely aware of them just dozing through them a bit like being awake in a c section but you can feel them in your tummy.

That highlighted that i dont think the spasm/buzzing etc are from anxiety but genuine physiological thing. Rang the GP again and said if its myelinitis I cannot cope with the sensations of it. He has recommended I take amytriptiline instead as used to calm neurological firing etc, is a mild antedepressant as well as sedative and so thinks it might help more. Im starting that tonight.

I may be off the thread a bit whilst I just try to get stable because obviously having been to hospital friends and family keep asking for updates and im
On my phone reliving it all a lot.

On a positive note if it wasnt for the neurological side I would have been saying I was well. Although my glands are up and im tired out, I have no real covid symptoms at all.

What is A&E like if you choose to go?
So im sure loads of you have seen my journey with 111, GP’s, BUPA doctors and coronahub. It eventually got so that as I dozed yesterday to rest i couldnt relax into sleep due to the electrical impulses in my body. At 11.30 I drove to A&E.

When i got there there were literally no patients and all ambulances were merely parked up in all the bays of the hospital with paramedics/staff getting coffees etc in good spirits.

I had to knock and wait outside a portacabin where i was welcomed in by two people in ppe and seated on a chair in the middle of the room like an SAS interrogation. I burst into tears and explained i couldn't get any help and that i could barely feel my legs. They were amazing telling me that “forget anyone else in this hospital, today we are helping you, you are who we are with, what do you need?”

I was assessed as Covid and routed through the “blue” section rather than the “red” clean. A&E had temporary partitions erected across the areas and staff had to use designated doorways so as not to cross into “clean” areas. I was literally the only person there. They quickly did all sats, gave me a mask and a drink and then started my other tests. I had an examination room to myself other than waiting for bloods where i was in a waiting room with porters who had nothing to do.
There was one ambulance admission but I assume they were taken into the resus/trauma area of blue section rather than mine. One other guy came in with a facial injury with mask and gloves and i noted they asked him to remove the gloves and they didnt wear them unless physically examining me. I was there 11.30-4.30 ish and throughout that time I was being actively assessed except for blood results. Dh and the kids dropped me off and came back for me later. It was all very very very reassuring, please dont be scared to attend. Xx

Crayfishforyou · 21/04/2020 14:23

Day 22ish
Bit of a dizzy day and fighting for deep breaths. sats still say 98 though.
I've noticed if I eat little and often my dizziness and 'panic feeling' are often slightly less than if I just get eating out the way and fill my stomach.

godhelpusall · 21/04/2020 14:27

@TheDrsWife46 glad you had such a reassuring experience at the hospital. What exactly is post viral myelitis?

Porcupineinwaiting · 21/04/2020 14:41

Just spoken to a gp. Did the usual dance about how did I know it was COVID but dropped that pretty sharpish when I asked why they weren't investigating what it is, if not COVID.
Agreed no sign of a secondary infection. Agreed I would call them again in 10 days if not recovered.

In 10 days I will be 6 weeks in. At that point I wont be sitting quietly at home any more just hoping it goes away, I am going to be demanding a bit more investigation and a plan for treatment. The nice thing about having COVID is I have absolutely no fear of travelling or going into hospital in case I catch coronavirus.

TheDrsWife46 · 21/04/2020 14:43

@godhelpusall some kind of nerve damage thing after a virus. I had a burning in my spine initially and then all the pains/tremors etc. I cant tell you exactly because when i googled it looked scary and long term and I refuse to consider that. So im focusing on trying the meds and getting well.

Im day 30 and no cough, swollen glands and thats it in terms of Covid. X

simplekindoflife · 21/04/2020 14:44

Good to hear positive news about people getting better. Glad to hear some have been seen in hospital too. Sorry to hear some are struggling today Thanks

I had a chest X-ray this morning at a small local hospital/urgent care. I was the only one there and in and out within 20 mins! Results will be sent to my GP. Not even sure what I want the results to be, isn't that crazy? If there is something there, at least I might be able to get some answers and some medicine to make me feel better. But if there's nothing there, I'll be reassured, obviously, but then there is no treatment or answers?! Confused

Better day today symptom wise though. Feel better in myself but still have chest pain, burning/cold upper back pain and a sore throat. My chest was juddering last night as well, independent of my breathing! Horrible feeling.

Roughly around 4 weeks - I struggle to pinpoint the first actual symptom. Healthy, active 39 year old with no pre-existing health problems.

OneDayAtATime123 · 21/04/2020 14:52

Feel better today in terms of SoB. Went out for a short walk . My heart rate seems to be getting better than before. The breeze does feel good outside.
Keeping my fingers crossed, since it comes in waves :-)

godhelpusall · 21/04/2020 14:56

@TheDrsWife46 I wish I understood viruses and immune responses better. The impression I have is that this virus causes an immune response of inflammation everywhere. How does she know it's post viral?

alittleprivacy · 21/04/2020 15:07

For anyone without a pulse oximeter I just downloads the digidoc app to my iphone. It's supposed to be quite accurate and didn't cost much. I wish I'd known about it sooner because my breathing feels close to normal today and the readings I took were all in the very high 90s, which was expected today. But I'd love to have had it on the days where my breathing was awful and I just felt so very tired and unsatisfied from my breathing.

godhelpusall · 21/04/2020 15:08

I still have the menthol taste!

Busybee37 · 21/04/2020 15:09

@thedrswife46 Really glad you've been seen and found it reassuring. I was prescribed amitriptyline for post-herpetic neuralgia a while ago, after shingles, and found it really helpful and with the useful side effect of making me sleep very well so fingers crossed it works for you too.
I'm on about day 36 and slowly improving I think but have had pains on occasion which reminded me of shingles so I'm sure this virus does affect the nerves. I did wonder about restarting the amitriptyline (I still have some left) but have managed without so far. Do hope you feel better soon

Countingsheeps · 21/04/2020 15:12

Thank you for the update @TheDrsWife46 it’s very interesting- I am also having the horrid tingling sensations and they often keep me up at night. They are, alongside heavy, tired limbs the worst symptom I am experiencing. I’m also Day 30ish. Xx

TheDrsWife46 · 21/04/2020 15:22

@Busybee37 @Countingsheeps funnily enough I tried to describe it like the tingle you get before a coldsore but all over my body. I cannot sleep through it, it completely consumes me like insects under the skin and in my spine.

@godhelpusall when i googled myelinitis is said ot often follows severe viral infections etc. And I had already discussed my covid symptoms leading to this. The Dr did say “this is a bit baffling because covid is presenting us with something new and the most likely is post viral myelinitis after Covid infection” when I googled it fit, but I refuse to believe its long term. My mindset is that im still fighting it off and that I’ll be fine. If I consider anything else then my anxiety cant handle that.

Meercatmama · 21/04/2020 15:46

Day 37 for me and woke up groggy and felt it was in my chest again not massively but there. Have managed to be quite active today but now resting as my back is aching at the top again. The breathlessness is there but not as bad as some days. Husband who is on day 23 woke up feeling better and has been active but he always goes down during the evening So we are waiting to see how we are now

Countingsheeps · 21/04/2020 15:47

Thanks @Busybee37 if this continues for me it gives me something to ask the gp about!

@TheDrsWife46 yes, the crawling feeling- I had quite bad restless leg syndrome when pregnant and it is like that for me, but more severe and all over! It is just horrible at night, you have my sympathies xx

Moodgie · 21/04/2020 15:59

Anyone else here as far as day 47 from the first symptoms (mine was sore throat)?

Bornlazy · 21/04/2020 16:12

Really glad you were assessed @TheDrsWife46. Fingers crossed the amitriptyline helps. Did they explain that it can take a few weeks to reach its optimum effect but you need to it keep taking it even though you might think it’s not doing anything?

I have a runny/stuffy nose today, a bit like I’d imagine hay fever to be like except I’ve never had it before. I wonder if this virus is leaving us with a lovely trail of new allergies and illnesses as it’s left our immune systems damaged.