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.

Lunchtime news being shared on the fb group. It was ITVif anyone wants to look for it elsewhere. Great publicity.
I am sooo tired. Coughing again, everything hurts, eyesight is rubbish, sore throat. Overdid it yesterday going to lunch.
My temp GP referred me for a liver scan. My perm GP won’t refer me for a liver scan and can’t find contact my temp GP as I’m not registered with them when he called and they don’t know who I am....meanwhile the liver scan dept on the other side of the country called to ask why I didn’t confirm the appointment ARGH so I’ve just done myself out of the ONLY investigation I’ve been offered....
I get why they say the NHS is a postcode lottery now....

Yes my daughter said she saw Message in a bottle video on the news today 😁

Morning everyone.
Hope it's a brighter day for you all.
I had a dreadful nights sleep - DH snoring - but the good news is that my symptoms have reduced a fair bit over the past few days.
Since yesterday I still feel very fatigued but at times it feels more like everyday tiredness (like I'd feel like after a long day of physical work) rather than the same bone crunching fatigue I've had for the past 20ish weeks.
Following a post on the long haul FB group about POTS I've started increasing my salt and water intake to see if that makes a difference to my heart rate on standing.
Muscle aches, headaches and earaches have faded (for now)
And best of all my period has started without a relapse for the first time in 4+ months, little pain - much more similar to how they were before I became ill.
Trying to be careful to continue with scheduled rests (at least 15 mins per 1-2 hours of closing eyes and lying down), a longer rest of 30 mins in the afternoon.
Fingers crossed I'm coming out the other side.

Morning everyone. Aw @TiddleTaddleTat that's wonderful to hear, especially with a period as well. Yes, crossing everything for you.

@LetsBeSensible sorry you're feeling rubbish and about your liver scan 😬. Hope you get it sorted. It's so draining having to constantly chase everything, especially when energy levels are already so depleted. I have some chasing to do today too!

I'm very much on a plateau here. About a week ago my mood improved quite dramatically - I'm convinced it's a new high strength EPA Omega-3 supplement that I've started taking. All I can describe it is that something seemed to shift, and although I'm still mainly lying down, I've been able to bring a bit more structure into my day, and feel that I'm actually convalescing rather than just being ill if that makes sense? I do light exercises in bed, walk to the back of the garden every day, sit upright for an hour. I'm doing an online mindfulness meditation course and learning a language on Duolingo. I'm managing a bit of light admin, I've had a few visitors and I get out for my acupuncture once a week.

These are such small things when I think back to my old life, and also my physical symptoms are still very debilitating. But the fact that I'm feeling so much more positive and able to manage all this is a big improvement (I think!). I just live in fear of relapses though and also think I've got a period coming...

So good to hear of your progress @fedupofbed - the little things make such a difference mentally I found. Hopefully you'll continue to progress to spend less time in bed.
@TiddleTaddleTat, good to hear you feel okay too.

I'm very achey today under the arms and ribs/back, probably due to raising my arms for the scan yesterday and also I lightly cleaned two windows. I'll probably take a couple of paracetamol which is the first time in a week so definite progress. Ideally, I'd like physio as I think my upper body strength is totally shot now. A gentle swim might help but I'm too scared of making things worse.

Hi Everyone, dare I say I've had a good few days. Chest pain seems abit less although sob still here. Progress for me is I have woken up on my back for the last week. Sounds crazy but I have been unable to lie on my back for 4 months as usually it restricts my breathing. So I take that as a massive positive. Hope everyone is OK and sorry to those not feeling great xx

Yay! @Kitcat122

Someone posted the following link on slack, which was very interesting, talking about need for rehabilitation services.

Egghead thank you for asking after me, that was kind of you - it is good to hear that you are on an upswing - I hope the recovery continues.

Tiddletaddle fingers crossed indeed that you are coming out the other side. Very useful point about salt and water intake - I do remember someone saying to me this was good for migraines but I had completely forgotten.

fedupofbed convalescing sounds good. You have been through the mill indeed. It is great that you have been able to have some visitors.

I am having a bit of a relapse since the weekend - chest pain is right back - not as bad as the first three months but certainly worse than it has been for a while. I spoke to my doctor about the dizziness when talking on the phone and she said that talking requires cardio-respiratory fitness - which of course has suffered during Covid19. She did say I was not sounding so breathless on the phone as I had previously - this is true, I can talk more just not enough to do my job properly! She did not really have much else to say except it will all take time (and they do not know how much time). I forgot to ask her what might be causing the chest pain - maybe just doing too much again (with too much being still a fraction of what I used to do). A bit frustrating as I am back to wondering if I am just stuck with it - but then as I say, it is not as bad as it was (looking back, it was excruciating). I am glad your chest pain has abated a bit KitKat

monty6 how is your DC? I think your son had symptoms at the same time as mine.

Sorry for not mentioning everyone, I am reading along but by the time I get online, I am usually running out of steam. I am at four months today

Morning all,

Pleased to hear that some continue to do well. Sorry to those still struggling or seeing setbacks.

I overdid it last week and at the weekend. By that I mean several consecutive days of hanging out a wash, 10 minutes of yoga and gentle pottering on the same day as a hospital appointment. My back pain, chest pain, fatigue, reflux, tinnitus and pounding heart returned badly on Monday.

It’s reminded me quite how delicate the balance is — something that’s easily forgotten once you start feeling a little better and get a high from feeling normal-ish again.

Time to start over, tone it back and add more planned rests.

Positive is that my breathing test results (lung volume and oxygen transfer) were perfect. Whatever the SOB is... it doesn’t appear to be my lungs.

Great news Millstone 😀

@MillStone and @KatySun, it's so frustrating to have a few better days then a relapse of sorts. It's not a linear progress at all. Glad your lung function tests came back ok Millstone - have they given you any indication what could be causing the sob yet? I'm awaiting my ct scan results but am also still achey and very tired this week.

@Lightsabre sorry you’re aching too.

Sorry no, The lung specialist only advised that from their side everything looked fine, was functioning well and let’s wait for the heart tests...

The echocardiogram and 24 hr ecg are this coming week, so maybe that will shed some light on SOB and heart pounding. Although... apparently my heart looked okay on the CT scan and sounded okay when listened to (I think they were investigating the possibility of a valve issue).

A question I did ask was if the reoccurring chest and lung pain can cause any damage. I was told no but that if the lungs are exposed to trauma - like they have been - then that pain might display In future chest colds or flu. Not definitely... but it can happen.

Interested to hear both your results @Millstone and @Lightsabre as although I am generally feeling much better my shortness of breath is no better. I feel like my lungs are too small.

It is great that you are having such thorough tests as that might help give a better understanding of what is going on Millstone but not great that you still have symptoms which warrant them. I feel a bit like I have been fobbed off but I also don’t have the energy to keep going back to the doctor. She did offer to write me a partial fit note for work (I have to talk a lot in my job) so I need to see what I can manage and maybe I will go back with some more questions.

I am sorry you are suffering as well, Lightsabre. It is definitely not a linear recovery at all.

I have been trying to think what triggered this latest relapse and the only thing I can think is driving (and maybe talking?). I had three days at the end of last week where I was driving about quite a bit (after months of not driving) and a longish work meeting where I was getting dizzy talking. I hope it was not the driving as I am taking the children away self-catering for a few days next month and I am already worried about the drive (I would normally be able to do it fine).

Sorry me again. One thing I have noticed since the current relapse is that my resting heart rate has gone down - and it had crept up again over the previous week and a half - which might suggest I was overdoing it without realising?

@Kitcat122 that’s exactly how I have described it too.

Sure I’ll share the results when they’re back but I suspect the diagnoses will be post viral.

@katysun I noticed my heart pounding stronger and longer in the lead up to my setback. Up until then it was improving.

I think it’s the sum of the parts — it might not feel like much but even driving takes mental energy and when we do a few things they all add up and push you over the threshold.

I’m currently trying to find my threshold, coast for a bit and then try to slowly increase it.

Anyone know anything about flying in the current condition? I have had a a bereavement and the only way to get there is a 2.5 hour flight. I am worried how it has affected my circulation and what impact the plane pressure might have. Any thoughts?

@Moodgie can't offer any advice but sorry for your loss 🌹

Sorry to hear about your relapses @MillStone and @KatySun - similarly I am relapsing when I have done several activities that are individually minor but have done too many during a short period. I was enjoying the Suzy bolt stage 1 yoga videos on the FB group but doing those every day for a few days meant I could hardly do anything else, so I have stopped.
I've also looked at my pedometer readings over the last month and noticed that if I do 2000ish steps the next day I crash down and barely move at all. This has been helpful in identifying a max of 1000-1500 steps per day at the moment. Usually I get to 1000 around the house and garden. I like using a pedometer because it counts all activity. Mine was only £15 on amazon and tracks sleep and heart rate too.
On heart rate, I'm definitely still meeting the threshold for POTS - standing up after lying down causes a jump in heart rate of 50 at times. Although I haven't tracked this I suspect that by the evening, after a lot of water and added salt, I'm having fewer POTS symptoms and hence feeling better.
I am very aware (and it is mentioned in the RSM video below) that this is a multi system disease and therefore there are likely multiple different things going on - for me I believe something like a post viral syndrome / possibility CFS now, plus POTS, as well as lingering symptoms from Covid (SOB, earache, chest pain).
It is complex and there are no simple answers !
@Moodgie I'm sorry to hear about the loss in your family. If I was getting a flight I would make sure I had a pillow to be comfy, loads of water, and would probably try and wear compression socks or tights.

Thanks @TiddleTaddleTat and @Kitcat122. I am worried as I have had lots of little
broken vessels on my legs since this started and still keep getting red patches on knees and thighs and have no explanation for this.

@Moodgie sorry for your loss could you phone 111 and ask their advice?

@millstone Thank you, I will try that.

@millstone I called the surgery and the receptionist said she didn’t think the doctor would be legally allowed to give me any advice either way.