Long Covid support thread

[fedupofbed]

A thread for those with ongoing Long Covid symptoms.

Some resources very kindly collated by @letsbesensible in the last thread:

UK sepsis trust vids go.mumsnet.com/?xs=1&id=470X1554755&url=m.youtube.com/playlist?list=PL16uJ-CyqxJIJpdLhf-Ccjhdvf4uNBIie Physio for breathing pattern disorders www.physiotherapyforbpd.org.uk/
Dysautomnia webinar video go.mumsnet.com/?xs=1&id=470X1554755&url=vimeo.com/442593497?utmcampaign=5370367&utmsource=affiliate&utm_channel=affiliate&cjevent=38c74aa9fd7b11ea82d1002e0a180512 Articles, links, Resources c19recoveryawareness.com
Ricovr project videos

POTS is a condition most commonly known for causing dizziness upon standing, but symptoms can include palpitations, headache, fatigue and blurred vision.

Wow. Me too. My vision is absolutely shot to bits since Covid.

Bubbins great to hear and will try that. Glad you’re feeling better!

@Wildswim thanks for sharing. Interestingly, I had my first phone call with the Long Covid clinic nurse in my area today. She had referred me for heart monitoring tests as a result of what was describing (dizziness on standing or after stooping over) so I wonder if it will be normal...

I’m also taking part in the Coverscan study next week finally, so curious to see what the results of those scans are after what is now 12 months of this...

My remaining symptoms are:

• Moderate fatigue which becomes severe if I try to have a ‘normal’ day without resting (e.g. a bit of work plus childcare).
• some dizziness/headaches and definite blurred vision on waking in the mornings
• insomnia which comes and goes. I’ve just had two awful weeks of only getting to sleep at 2am...

At the moment I’m finding taking Piriton at night helps a bit, but not completely.

It is getting better, but just still slowly.

Hang in there everyone!! Love to all xx

@Bubbinsmakesthree that sounds promising. Fingers crossed for you. I think a few people have discovered some previously unknown deficiencies.

@Whatapickle78 that's good you've had that appointment with the nurse - it will be interesting to see what the tests show up. Your symptoms are very similar to mine - though my dizziness has eased a lot, which is lucky (that was the worst for me). Anyhow glad you are getting better, albeit slowly. We all just need patience!

I have had a bit of a setback today. I have been back at work for about a month, which has been fab. I've been so glad to be back doing things and seeing people. It was tiring, but I have always been fine by the next day (or recovered from the work day anyway). Plus it helps that my managers and team are brilliant. I started off just doing half days, and have been on lighter duties, and everyone's been really supportive.

Anyhow this week I was in 3 consecutive full days, finishing today. Had an ok day on Wednesday, brilliant day yesterday. Then this morning my chest was really bad. Really awful breathing. I just felt awful. So I left at lunchtime after talking to my manager, who was brilliant. I was driving home and when I was nearly home (2-3 minutes away, literally), I had to pull over. I was too fatigued to even drive the rest of the way and my wife had to come and get me. I think my body just went, "Nope! Too much!" And then through the afternoon a lot of my earlier symptoms, that I haven't had as badly in recent weeks. It was a good thing I left when I did!

I think my manager is going to send me to occupational health, which is good. And I'll just have to see how I am after a couple of days rest.

Hi everyone. Looking for some support. My DH caught covid from me over Christmas holidays. He was seriously ill with it ( they suspect he had a mild heart attack just before he was admitted) unlike me who had in extremely mild and he was in hospital for a week very poorly and narrowly avoided being intubated. Anyways here we are two months later and he is still struggling with exhaustion and a worrying development last few days is his lung pain which was gone seems to be starting up again and he is having consistent episodes of palpitations at least once or twice a day, no pattern to this . He had a heart scan and they said they couldn't see any permanent damage ( thank goodness) and he has a lung scan next week. I guess my main question and worry is, will these palpitations stop? Why is he getting them?is this going to put more strain on his heart leaving him at risk of further heart attacks etc? He is only 30 but if covid had taught me anything is to not be naive about what it can do. I just wish I could wave a magic wand and make him better .

@Melabells
Sorry your post was not answered. How is he now?

I didnt answer, and maybe others didnt either, because I didnt really have lung pains. I did have palpatations a couple of times when I went to bed, but I never knew if that was part of long covid or not.

Those of us on this thread, have some symptoms different from each other, so sometimes posts are not answered for a while, as a new poster's symptoms dont necessarily match someone else's.

Following on from that, and sort of similar, in that I was wondering if others on here had any blood issues?
I did, and part of me has hesitated about having the vaccine because of it.
I am on a thread about Ireland suspending the az vaccine, along with several other, mainly european countries now.
My blood issues[one major but it didnt last too long] plus other minor ones, went on from 3 months after having covid, to about 8 months after. Sort of one a month.

Has anyone had painful, swollen glands in their neck? I’m about 9 weeks on from first getting Covid but I’m having strange symptoms which ebb and flow. Headaches everyday, palpitations, fatigue, insomnia, digestive problems, numb hand and fingers, sore throat, flu like, aches and muscle pains. Does this sound like it could be Long Covid? I feel reluctant to ask when so many of you have suffered ill health for many, many months but it would be good to know if these symptoms could be related. They do come and go, some days are certainly better than others and just when I think it’s settling, they start up again. Any thoughts?

@Dogatetheleftovers that sounds very possibly like long covid - all very familiar symptoms which come and go - aside from the fatigue which is constant, although the extent of fatigue varies. There are such a wide range of symptoms though so it could be other things or could be long covid plus something else, that's what's so tricky to know.
I am a year in now, and still experiencing all of the things you mention except numbness (though I know others have had that too). Rest rest and more rest would be my single best piece of advice. Good luck with your recovery, and worth checking in with your GP on your symptoms in case they think it's worth getting any blood tests etc done - I have no medical training!!

Thanks seriously. I’m really sorry you’ve been unwell for such a long time. Did you have any blood tests, if so when? I’m not sure if I should be bothering the GP after just 8 weeks. It’s hard enough to get an appointment at the best of times at my surgery! When you say rest and more rest, do you combine this with some exercise. Just a walk for instance, although I’m not sure if I could cope as I still get really breathless but my DH thinks I should do some exercise to stop my muscles “seizing up”!

Hello all

Just checking in how are you all?

Week ten here

I miss work
Hate being exhausted all the time

Can I check if anyone can offer advice on supplements they found helped them?

I tested positive 5 months ago. I only had mild symptoms at the time but then the breathlessness started and dizziness. The latest thing is pins and needles during the night and then weak hands in the morning. Does anyone else have this?

@movinghousetoday I tested positive about 5 months ago and I've started getting the pins and needles thing. I've still got weird chest issues and joint pain if I do too much. I also get random shooting pains too

@Dogatetheleftovers in my experience (and seeing what many many others have said in various support groups) exercise should be avoided until you are feeling consistently better. Yes a short gentle walk (5 mins each way) if you feel up to it perhaps. But if you are too breathless then I wouldn't. My first two relapses (before I realised what was going on or had even heard of long covid) were after doing a bit if gentle Pilates or a flat bike ride round the block. So yes you may lose some fitness short term but with what I know now about my own situation I would not do any exercise myself if I had my time again. I do enough steps around the house - up or downstairs, putting a wash load on, then lying down!
Once you feel well enough go for your short walk, and see how you feel the next day, if ok, stick with that short distance again a few more days before you go further.
Google 'pacing' for fatigue. Even if you are on an improving trajectory rather than heading for long covid it might be worth you taking a pacing approach to your recovery to help you avoid the situation I'm now in. best wishes!

Oh and re blood tests. I have had the usual full blood count, checking ferritin, thyroid, inflammation markers etc. Plus I think bit B12 and cut D possibly. So yes worth asking in a week or two if no improvement. The GP should now be clued up on long covid (should being the key word!). Mine is sympathetic and happy to do bloods but I am still awaiting my long covid clinic appointment.

Also worth checking the stuff for GPs here
www.bmj.com/content/370/bmj.m3026

I think it's after 12 weeks they can refer you but no reason they couldn't do bloods earlier to rule other stuff out

[quote amyj606]@movinghousetoday I tested positive about 5 months ago and I've started getting the pins and needles thing. I've still got weird chest issues and joint pain if I do too much. I also get random shooting pains too[/quote]

It's really scary isn't it. It's good to hear others have it as it stops me thinking I have something seriously wrong with me. It's just strange how it's just started. There are some long covid groups on Facebook and a lot of people describe the same thing

Seriously you have been so helpful in explaining some really important things. I’m going to heed your advice about pacing and see how I am in a couple of weeks. Hopefully this will help but if not, I will speak to my GP.

Thank you for the BMJ link Seriously I will try this with my GP. I have been referred to a long covid clinic but there hasn’t been any blood testing offered so that seems not quite right.

to everyone still struggling.

My only recommendation is rest more then you think you need and trying the ‘low histamine’ or ‘low inflammation’ eating referred to in other threads has helped me a bit- or at least, I haven’t properly stuck religiously to ‘low’ foods but knowing the very high histamine/inflammation-causing foods to avoid- fermented stuff, alcohol, major sugar, salt etc etc seems to have helped.
I’ve tried the ‘healthy’ gut suggestions like pickled/fermented stuff it has made me feel headachy and ill again for at least 24hrs and skin rashes have returned. I think we’re all a bit different though in the symptoms we’ve had, so different things may help us or set us back.

Hi everyone,

I’ve just discovered these webinar links on the Coverscan survey results on Long Covid.

Only had time so far to listen to the first one, but it was really helpful on exercise advice particularly.

coverscan.com/news-%26-updates/f/coverscan-update-webinar-focus-on-patient-groups

I had my tests done on Monday at Coverscan so hopefully the results won’t take too long...

I was on the first lungs burning threads. I'm a year on. My lasting symptoms are sob and chest pain. An inability to do any cardio. In myself I feel fine now apart from this blasted chest pain and breathlessness which is milder than before and allows me to do careful HIIT exercise but no running or cardio. I was refered to the post Covid clinic. I have spent the last few months having xrays, blood tests and lung function tests. All came back clear so I have now been given an app to use and told there's nothing wrong. I'm very glad all my tests are clear but why still the chest issues?? It's so frustrating. The consultant said I was looking at it wrong. I am thinking I still have chest pain after a year. He said I should think how much better I am from last year 🤣🤣🙄.

@Kitcat122 absolutely feel your pain... it’s so frustrating!!

Interesting on the HIIT versus cardio. Have you had any explanation from anyone as to why you can do one but not the other?

I’m similar. Sometimes walking and some gentle jogging can make me feel horrendous, but weirdly I’ve had no issues with bouldering (indoor rock climbing) which last year I used to help me physically recover. Short bursts of intense activity with rests in between.

On Monday a 6 min walking exercise test showed it caused a spike in lactic acid, which means my anaerobic process was kicking in way to early (would normally kick in with sprinting, or ‘hitting the wall’ in runs.

This does seem to indicate that all is not well, but not sure where yet!

One theory is that this is happening with long Covid patients because COVID has disrupted our mitochondria, restricting oxygen circulation, so setting off anaerobic processes which make us then feel sick.

@Kitcat122 they should also test your heart, can you request this?

@Whatapickle78 I asked about heart but after the Thoracic consultant had spend 10 minutes telling me how great my lung function was etc he wasn't interested. He even told me my sob was probably just me being less fit. I tried to explain it was a totally different kind of breathlessness but he had made up his mind I was fine and didn't need further help. He said no one has had Covid longer so who knows it maybe after the summer before myself chest feels better 🙄.

The mitochondria theory makes perfect sense to me given the multi organ symptoms and exhaustion. But what I don’t understand is how are we supposed to recondition our mitochondria? Can anyone explain very simply to me, what is the cellular mechanism of mitochondrial replacement?