COVID long-termers 14 weeks+

[isitorisntit]

Welcome all. I'm sad that many of us are still here but at least we have each other. The other thread is full, hence this new one.

Welcome anyone else who is struggling with a long recovery from COVID. They're a supportive lot, here.

@tupperwaretowers sorry you’re struggling.

The low heart rate seems to be fairly common. I’ve noticed a few people mention it and it effects me too. My HR is normally low but it has been dropping to the low 40s at times. I’m also plagued with a bounding heart that beats like a drum in the early hours and morning— it doesn’t race, it just beats hard through my whole body.

As for the lung and back pain, I think it common with PVF and CFS to experience flu like aches and pains. I attribute my aches and pains to this... and hope it disappears with time.

@MillStone thanks for this. I just need someone to pat me on the head and say everything be be ok!! This thread and people in similar situations is sadly reassuring. I’m trying to increase my exercise and move about a bit more. Hopefully this will help.

@tupperwaretowers totally, this thread has been a lifeline. I’m not as far in as you, I think I’m 18 or 19 weeks. I forget.

There seems to be a fine line between doing too much and too little. The line seems to change daily too 😫

I find gentle yoga and stretching to be energising and relaxing at the same time.

We just need to listen to our bodies, and gently nurture them back to life before March 🙂

I might give Yoga a try, dabbled with it in a class last year, my daughter hasn’t let me forget the time I trumped!! Can you recommend an online yoga tuition??

I started walks with hills and I am finding breathing from my diaphragm really helping with the chest pain and shortness of breath.

@tupperwaretowers my heart rate's still all over the place too. I'm sorry you're at a low point.

I've found a couple of gentle recovery yoga classes run by teachers who've had Covid. One is on Facebook (the group is called Yoga and PT for gentle Covid recovery). There is also a teacher on the Slack group doing very gentle stretching exercises on Zoom every week. The last time I tried the Facebook one it was too early for me but I think I may be ready to try again soon.

@fedupofbed its frustrating isn’t it. Thanks for this I’ll check out the FB one.

I’m going for my chest X-ray tomorrow. Can’t believe how far backwards I’ve gone, it’s like being in May

So sorry you're still relapsing @LetsBeSensible . Sending strength and hope that all goes well tomorrow 💐.

Knackered myself out again today doing too much with the DC
But at least it does seem now that for me, a ‘relapse’ means I now take myself to bed for an afternoon to a day to rest.... rather than days on end of not being able to do anything. And I know that reading others’ experiences, I should be thankful for that. I’m now also at the state of starting to ‘mourn’ my previous life, being able to just go for a walk or a run, feeling optimistic... rather than a recovery phase of an illness. And this is making me sad today.

@Whatnext2018
YES to your question about irritability. I am snapping and shouting at both DP and DC far more than I used to, I’ve really noticed this. As well as a short fuse, I’m now completely unable to multitask, even just doing two things at once. It does make me worry about how our brains may have been effected (or maybe I’m turning into a man!)

@fedupofbed
I did feel better for a little while thanks. I think having read a bit about the vagus nerve, there is definitely something in trying cold water therapy - as well as more full breathing techniques. I do always notice a positive impact when I do gentle yoga too. Do you find cold showers work for you or does it have to be immersion do you think?

Hi all..I’ve been following for a while and just reading has been a support to me. I became ill back in March - not tested, but short of breath, hot/cold, loss of smell etc
I’ve been up and down since then like many of you and this week I’m finding it very hard to stay positive to be honest.
After a few weeks of feeling not too bad this week I have the heart pounding / racing heart feeling back. It’s awful. As soon as I wake in the morning I feel as though adrenaline is coursing round my body. My heart just feels so like it’s racing, I feel a bit nauseous with it.
I think I’m looking for anyone else that is having similar relapse??? Anyone?
Or in particular if anyone can advise - can I ignore the feeling or should I be resting ? Anyone finding any relief from it?
Mentally I’m finding this very hard now. Love to all.

Hey guys, thought I'd update here. On Friday I did a nearly 5 hour drive to visit family. Slept with DS on a sofabed. On Saturday my costochondritis had flared up worse than it's been in months. Just about bad enough to affect my breathing again. I thought it might have been the uncomfortable sofabed. But when I googled it, the suggestion was the driving was the problem. The pain had eased back on Sunday and Monday, and was manageable with anti-inflammatory gel, so it obviously wasn't the bed. I drove home yesterday and after a night in my normal comfy bed, my sternum is on fire again.

So be very, very careful with driving any long distance. I've been able to manage huge amounts of exercise, including having a couple of falls on my skates without any relapse. But the driving, which felt fine at the time, was a trigger. I'm going to rest it big time today. Maybe some gentle stretches and a hot bath/shower later. I was going to take DS to his sports training tonight which is an hour drive each way, and often I train with the adults when he's done. But I think I'm going to tell him a white lie tonight and say it's cancelled. I don't want to risk extra driving today. (Especially as we have another family visit planned for next week.) Hopefully it will ease off again tomorrow.

Also on the thrush side of things. I don't know how much the fluconazole helped. It came back on day two of taking it and seemed to worsen by Saturday. The very last dose on Sunday seemed to ease it back and I'm using Corsydol mouthwash, which has antifungal properties. So it's managed at the moment. I'm also wondering if the congestion I'm experiencing is caused by the thrush, as apparently that can happen. So I'm going to go back to using saline irrigation to help the congestion.

@pasinphoebe
Hi,
Sorry your not feeling good.
We've all experienced one step forward. Two steps back.
Sending you love and remote hugs!

ps. Too you all.

Thank you @BeautifulPark I appreciate not being alone.
As with many I was fit and well before this .. I’m finding it hard not knowing how to get myself better and now just resorted to being a teary mess feeling awful and guilty that it’s summer holidays and I’m now not up to anything.

Please can I join you at the very end of this thread? I was ill back in March, lingering into May and then felt much better only to be down with breathlessness and palpatations the last two weeks. I'm also finding my heart rate dipping into the fifties regularly. So sad and gloomy with it all. The worst bit is the fear and hiding it from the kids. I'm also feeling so guilty that it is the summer holidays and I am struggling to climb a flight of stairs.

Hi @pasinphoebe sorry you're going through this too. I can totally identify with the horrible horrible adrenaline feeling, which has been one of my most recurring symptoms.

I'm not sure I have any solution really but I would certainly advise resting. Can you think of anything you did to set it off again? Have you been overdoing it?

Someone on the Slack group swore by celery for this symptom. She said she ate 4 sticks and felt much better. I've not tried this as I hate celery! @Moodgie was it you who was going to try celery juicing??

The things I do are work on calming my body and trying to be positive and grateful. I found high strength EPA omega 3 oil really effective. I did a lot of EFT tapping when I was really ill, and am now doing more meditation (I couldn't do it for a long time as it seemed to make the jittery feelings worse- it was like my body was stuck in a loop of panicking every time it tried to relax if that makes sense).

@Whatapickle78 I think the cold showers are helping too. They certainly make me feel invigorated straight afterwards. We're all different though so this may not be for everyone.

@oscarandelliesdad I'm really sorry you're still struggling. You're not alone.

I feel very guilty about the summer too. DH has lots of work issues and I'm too ill to do anything so they're pretty much day in and day out at home and mainly on screens 😕.

Sympathies @oscarandelliesdad you sound the same as me. A good period but now a very dark period unfortunately triggered by these palpitations and feeling breathless. I’m sorry that doesn’t help you but I find it helpful knowing it’s not just me.
@fedupofbed thank you so much for your time, I know you have been here a very long time, I appreciate all of your kind words and will look into any possible suggestions to help. Much love to you for reaching out to us all.

Thanks fedupofbed. We are heading back to school next week up here. The anxiety of trying to teach ( primary) and put my own dc back to school is really playing on me as well. I think I'll have to get signed off unless I have a marked improvement... It's good being able to be honest here at least. Dh gets upset when I try to discuss my symptoms with him. Thanks again for the kind words

Thanks @fedupofbed I’m just so grumpy and disappointed at how very I’ll I am.
Welcome @oscarandelliesdad @pasinphoebe
As the thread is nearly full, I will start a new one in the next hour, then pop back here with a link

@LetsBeSensible @oscarandelliesdad @pasinphoebe @fedupofbed @BeautifulPark @alittleprivacy @Whatapickle78 and anyone else I've missed... sorry to hear so many are finding the emotional toll of recurrent symptoms difficult to bear...and on top of it out guilt about parenting during the summer holidays...

I am feeling the same. Having a bit of a relapse - chest pain , tinnitus and fatigue mainly . Drove a short distance yesterday for the first time in months, stood in a queue and went into a shop. Have also increased my daily steps from around 1500 to 2000, more on some days. Return of Chest pain suggests I increased too quickly so am resting more today.

Really want to get smart with this and try and avoid the boom and bust pattern.

Have added omega 3 to my daily cocktail of supplements and will see how we go.

@fedupofbed Yes, i’m sticking celery into my nutrininja every morning. Not a fan of celery myself but It’s perfectly drinkable!

Hi all,
Sorry to see so many still suffering and at such late stages too. I’m better emotionally than at the weekend, that now feels like a strange episode almost and my mood does worry me sometimes as at times I definitely don’t feel ‘Myself’ anymore.
I think I’m around week 19, still pain in chest at times, pain in calves is back this week and almost always sore eyes. I just keep trying to remember that things were a lot worse before and even though things return it’s not as bad as before.

Does anyone have any knowledge of any research done or how long recovery actually is? I just read on a group it’s 3-6 months. Considering a lot of us here are on our fifth month and still experiencing a lot of symptoms, what are your thoughts?
Do you all still visit the doctors? I’ve just kind of accepted this and that there’s nothing that can be done and am just kind of waiting (hoping) for it to be over 🤷‍♀️

New thread as this one is nearly full
www.mumsnet.com/Talk/coronavirus/3986609-Covid-lungs-long-term-18-weeks-support-thread?watched=1

Hello all

Sorry to hear that some of you are struggling, and have relapsed...

@alittleprivacy I was interested to find out how the fluconazole went. I'm glad to hear that the final dose seems to have done the trick. The Oral Suspension I have been given hasn't really touched it. I didn't think it would. I have come off the Omeprazole in readiness though, so there is no reason to not prescribe me anti-fungals. I had a small bout of heartburn last night, but it felt like "normal" heartburn if that makes sense, and went away after I drank some water. I was pleased.

My symptoms remain:

• Hot skin, especially on hands, and on the back of my neck.
• Glands still sting
• Still have the odd "breathing through dust" sensation come and go - but I think this is fungus.
• My heart rate is still low, but haven't noticed it drop below 50 for a while - but then again I'm maybe not measuring it much. I have a 24 hour ECG booked for Monday though, so that should be interesting.

@Whatnext2018
I am more irritable, that's for sure.

Tomorrow, I have an appointment with a respiratory consultant, who I believe is the Covid-19 guru here in the Highlands. I'll report back. My main concerns just now are heart damage and if I have developed some form of auto-immune disorder. I am hoping they will write me a wee script for fluconazole while I am there.

Other than that, I am doing fine! I'm able to work, I've been out and about on walking expeditions with my friends. I am aware I am very lucky, and hoping it will continue on an upward trajectory. In fact, Auntie Flo showed up today, there has been no drama there except my hands burning slightly more than usual.

I'll report back what the consultant says, shall I?

Cheers all xxx