COVID Lungs 8wks plus

[baroqueandblue]

Saw the previous thread is almost full. Hope I've not duplicated a new thread! And I might not be the best person to be custodian of this one, so feel free someone else to start a replacement and I'll get this deleted. Otherwise -

Here we all are, at least 56 days plus 😕

@godhelpusall

Sorry if it doesn't apply, but are you due your period, I get really anxious just before and doubly worse since Covid these past 2 months.

@mytimetogo when I lost my sense of taste and smell I had a day or two about 15 days in when I could smell burnt toast all day. Very weird. Taste and smell came back gradually after that though.

@fedupofbed so pleased you are feeling a bit better . Small steps! to everyone who is still struggling.

DD continues to say she feels awful but she is definitely looking better and gradually doing more. Her biggest difficulty now seems to be brain fog when trying to do her school work. I’m just happy she is playing a bit more with her brothers and is more like her usual self, though she seems wiped afterwards. GP said she was writing to paediatrician last week and I haven’t heard anything back so I assume they have no plan of action.

@Whatnext2018 I'm glad you're seeing a different doctor. Hopefully they'll give you a proper examination and give you some reassurance. My lips and nose feel a bit numb and tingly today as well. I'm wondering if it's a circulation thing, as my feet are always so darned cold and tingled in the past too.

@Mittens030869 108 days, what a long time. I still have a bit of a fever too each day but it's gradually lessening to maybe only an hour or so a day. I'm sorry you still have all those other symptoms, it's painstakingly slow.

@godhelpusall that feeling you describe is just the worst. I'm sure it's not psychological, it's a proper symptom, experienced by many and very hard to explain to people who haven't had it. I haven't had it since Tuesday and crossing everything that it's now gone.

I'm definitely still in gentle recovery. Still mostly resting in bed, but I had lunch in the garden today. I haven't had any cardio symptoms for a while. My GI symptoms have upped a bit but not to an extent that it's all consuming. I'm having a bit of a burning sensation/reflux and that too is manageable. I might just get in touch with the doctor about the tingling lips for peace of mind.

Thank you @sleepwhenidie 🙏🏻

I'm glad your daughter's coming through it too. It's very slow and non-linear but we're hopefully getting there.

Has anyone joined the Facebook #covid1in20 group? I'm finding it very helpful and empowering, lots of calls for action and sharing of information from other European countries.

@godhelpusall I've definitely had that symptom, am sure it isn't anxiety, it's like being on high alert or something, almost like a chest pressure. It's hideous. @fedupofbed I'm on there. Agree it's great, there was a wonderful update from a French lady who had been seen by some doctors and they had given a very detailed hypothesis about what may be happening to us all. It was very encouraging in that it suggests we just need time to heal, everything stems from damage done by covid and the exhaustion to our bodies from the effort of fighting it off. It's worth a read. It's also on Twitter somewhere I believe.

Day 72

Just checking in with everyone on this thread.

I've not been on for a week. Last weekend was tough, I felt like I had gone back to week 2.
I couldn't shake off the constant headache and dizziness.
Come Tuesday I started to feel (whispers) a little better.
I am still SOB,joint,upper chest front & back pain,wheezy,phlegm,headaches and lungs feeling twitchy, burning/dry skin.

I am managing to potter around the house doing most of the chores with rest inbetween (My new normal).

I feel that now I have accepted this is how it is, and take one day at a time, I'm more settled within myself. I have started to write my symptoms week by week in a book (more like war and peace ), so I don't dwell on them but I can show my doctor/consultant if needed. I feel more in control, rather that the other way round.

I've had a phone call from my asthma nurse to make sure I'm still shielding.(apparently people had texts to say they were no longer on the list.She wanted to make sure that I know I'm on the list and if I needed help. I said a new pair of lungs would be good.)
She said there are a few still having post viral issues. I'm to phone GP next week. If I'm still having breathing problems, she wants me to have a chest x ray.

Yes @Moominmamma33 I read that too, it was really encouraging. She was seen at a hospital in France looking in to long recovery cases.

Nice to hear from you @Rosesofeyam. I’m so sorry about the relapse. I’m having a mini one too. It’s been so confusing about the shielding. I haven’t had any communication and don’t know whether I should still be shielding or not and if so when till. Take it easy and hope you feel better soon.

@fedupofbed and @Moominmamma33 hey, I don’t suppose you can copy and paste the french ladies message here can you please? I’m not on twitter or FB and it sounds really interesting

@MillStone A woman in France has just tweeted her experience of having an in-depth consultation (1h15m!) at a hospital that is investigating long-term cases. The hospital has been overwhelmed with calls from similar cases, and is seeing a lot of people with diverse symptoms whose examinations have come back normal or almost normal, with tachycardia common. The medics are keeping an open mind, but these are their hypotheses:

• the virus is no longer active. Some viruses stay active in the body (e.g. herpes), but no known coronavirus has remained active. For those who have been ill a long time it's not a reactivation of the virus, even though they can detect dead cells
• Some of the symptoms are micro-lesions caused by a strong immune reaction which has caused damage while secreting autoimmune antibodies that are attacking our bodies. These micro-lesions aren't detected in examinations but would be seen under a microscope during an autopsy. These lesions are reversible. Medics are more concerned about people whose lesions are detected in examinations. The autoimmune reaction can affect anywhere in the body where the virus is detected, and the affinity with ACE receptors (which are found throughout the body) explains the multitude and diversity of symptoms.
• After the immune response there is a state of inflammation that can last a long time. This woman's blood tests indicate she is only getting past this at Day 77. This inflammation can be seen in diverse ways in blood tests, and can affect anywhere in the body, causing pain, thickening of blood, etc, on top of the lesions caused by the immune storm.
• After those phases, there is a post viral stage. With other viruses this happens to a small percentage of cases, but with covid it affects a lot more people. This is because the fight has used up a lot of the body's resources, so fatigue is normal. Some shortness of breath could also be on account of this, even without lung problems. We're asking too much effort from our bodies so it shows signs of fighting (shortness of breath, tachycardia, pain). As if you tried to move a heavy piece of furniture normally, except the threshold is much lower. This phase can last several months but should reduce. The medics think that the majority of people shouldn't get chronic fatigue syndrome (he was using Dengue fever and glandular fever as a basis for this assumption)
• There is a risk that the body being weakened could give rise to other things, e.g. other inflammatory issues that were latent but previously indiscernable, but further research is required to understand this. If you have latent viruses from previous illnesses (e.g. herpes, glandular fever, Dengue fever, shingles, chicken pox) you could get symptoms reappearing, but this would be picked up in blood tests.
• His advice was to go at your own pace. Walk, use an exercise bike with no resistance and stop as soon as you are tired or out of breath. Really listen to your body and don't push your limits. Rest, avoid stress, eat well to build up your reserves. Be patient, and look after yourself
• Antibody tests aren't sufficiently reliable (90%), but it's a question of the proteins targeted. If your body hasn't used that protein to fight the virus it won't be detected in tests
• She had 12 blood samples taken for further analysis and to check for other inflammatory illnesses and to study in depth her immune response. She goes back next week for the results

That's the post on the french lady

egghead68 Thank you.
I'm sorry you are still on this rollercoaster.

My asthma nurse said that they have had alot of calls off patients asking if they are no longer on the shielding list. My GPs decided to phone the patients on the list, so there was no confusion.
I was also told to stay in until 30th June. Then follow guidance from there.

I'm fed up of not going out and my chest is definitely not great as I can't walk the phylum off. IYKWIM.

@godhelpusall thank you! Positive and something to hold on to.

@godhelpusall
I’m right there with you today, I have no history of anxiety but I’ve had a big panic attack today. I’ve not felt like that for weeks. But if upping your meds might help, do it. There’s precious little else that does.

Today On day 68ish my heart rate decided to drop to 50, I felt as though I was going to faint. Then with a squelchy thump feeling it went back to the 70s. Previously it would have probably shot higher but I think the beta blockers are working.
We have private health insurance and DH wants me to chase it for a cardiology appointment, what with the pulse spikes at 170 a couple of days ago.

I had the burning smell last night, it’s weird.

@Whatnext2018 @fedupofbed i have had very cold and sore hands and feet (Felt like when you have been out in the snow too long). It thankfully only lasted a few days. I spoke to a consultant at hospital this week who things it is neurological and that neurological symptoms are not being discussed enough. It might also explain numbness, but i think worth following up with your gp.

I don’t post very often. I am week 11. I have struggled with this last dip, but feeling slightly brighter the last few days. Still tired with intermittent low grade fevers (mostly in afternoon) and chest pain. Finally got checked at hospital, all looks ok. Potassium was bottom of range, which looking online seems fairly common with covid e.g. www.drkarafitzgerald.com/2020/04/04/low-serum-potassium-in-covid-19-and-thoughts-on-interventions/. Might be worth checking.

My kids are still unwell also. One of them is really struggling with a sore tummy at the moment.

Best wishes to all

I have just looked at Addison's disease and I'm wondering if that fits. I wonder if this virus has drained my adrenal glands. I have even got dark patches of skin on my face and in the creases of my legs.

Thanks for posting that @godhelpusall - I would love to know what follow on blood tests she has if she posts again please.

I find it helpful when people post their experiences of GP and medical advice as it seems to differ around the country. I feel that, after 3 months say, I can go to my GP and ask for further specific tests that some of you have been offered. Just got to hope this inflammation dies down soon.

@sleepwhenidie
Pleased to hear your daughter is getting a bit better. My 11 year old son is too, but it’s just so slow! It’s been over ten weeks. At least September is still 3 months away, he should surely be well enough for school by then?

@scampersaur god I hope so! DD is also into wk11. Very much hoping it’s not another false dawn 🤞

Just back from the doctors. I had an ECG which was normal. My pulse rate is a bit high and I'm slightly short of breath still so he wants to send me for a chest x-ray which I really don't want to go to at the hospital. We are the 5th worst R rate in the country here so I don't feel safe.
I'm not struggling with lung symptoms. They are possibly a bit inflamed still but I don't think it warrants an x-ray. I can breathe fine. My sats are normal.

He's doing some more bloods on Wednesday to check for things like diabetes and menopause and also wants to do a 24 hour urine test but I don't know what that's for.

@fedupofbed Thank you. It is frustrating, isn’t it? I haven’t had my temperature go up today so far but that’s probably because I took paracetamol because of back ache. I’ve been there before, thought I’d turned a corner and then found I hadn’t the following day.

I did walk to Tescos and back today and did some shopping (a 15 minute walk) so I’m persevering.

@ofwarren I am glad your doctor is being thorough.

My surgery are being rubbish and have still not put through my referral for an urgent echo and 24hr ECG requested by the GP on 14/5. Every time I call them they say someone will call me back and then they never do. Shame on you Babylon GPatHand!

@EggHead68
Oh no, that's not good. I was very fortunate to get to see the surgery's newest GP. He's really keen and lets you have any test you like. I was in with him for about 20 minutes.

@ofwarren that sound good. The young ones who aren’t partners are generally happier to spend cash on tests in my experience!

I was referred for a chest X-ray, but it hasn't happened yet. I know it was very complicated at the time, which is probably the reason. I should chase them up, but tbh I haven't felt up to it. I had one earlier on anyway and I can't really imagine there's likely to be anything else to see now anyway.