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

@LetsBeSensible sorry you’ve been through all that but I’m glad you’ve got a formal diagnosis and can hopefully get swift treatment.

I’ve been told a GP will be in touch with me soon - really hoping I don’t end up at A&E.

What a rollercoaster this whole thing has been for so many.

I’m taking Fexofenadine (sp) @Whatapickle78 I was told they’re non drowsy but now I’m wondering if these contribute to my insomnia too, I was assuming it was just the illness itself. I’ve started taking them before bed too as I’m so paranoid about another crazy middle of the night attack thing!
How much are you on? Mine say 120 mg per tablet and I think is one per day? But many people are on two a day now, aren’t they?

Well, my period has stopped and so it seems has the awful vibrating bits, I’ve now got the return of an itchy, blotchy chest, I had this back in April/May but not since. Also having quite painful earache, which is new, anyone else?

@LetsBeSensible Sorry to hear about the gallstones, that’s all that’s needed on top of everything else, but true as you say, at least it’s something they can solve, hope you have a speedy recovery.

Quick update from me - spoke to fairly unhelpful GP who wasn’t particularly interested in history of symptoms. Said it sounds like I have reflux - has prescribed lansoprazole (I think). Prescription should be ready in morning. She’s ordered a stool test to test for Helicobacter pylori. The irony of the fact I’m waiting on results of a £335 stool profile! She was very disinterested in my thyroid and quite nasty about nutritionist, suggested me eliminating foods could be the problem 🤷🏼‍♀️ Said I may have had Covid (onset of symptoms 15 Jan) as I’ve had SOB and palpitations - she brought this up, not me. Was quite snotty about the fact I didn’t test at the time, too late now. I’m really annoyed with myself for not testing but my DH had me convinced I was being stupid. Who knows, I don’t know what to think about anything anymore.

@Whatnext2018 I’m glad your nerve issues have calmed down. I do get ear ache, has been pretty bad at times. Have had mildly sore left ear this latest ‘episode’. Have always thought it was when my thyroid is swollen 🤷🏼‍♀️

Forgot to say I also have an itchy, blotchy chest at times, mainly around ovulation/period.

@Whatnext2018 I was on 120 as well. I was taking them at bedtime too and they really had a terrible effect on my sleeping. What I might ask the GP is if I could take Benadryl at night then if needed Fexofenadine in the AM. Maybe by bedtime the non-drowsy will have worn off? Maybe you should try taking yours in the AM to see.... I’m still catching up on sleep so not going to do that yet!

@LetsBeSensible I'm sorry to hear about your gallstones though what a relief that you've finally been seen by someone and properly diagnosed. I hope you get relief from the treatment and that your heart rate goes down.

Re antihistamines, I'm taking loratidine in the day, but I also take a piriton at night. I don't think it's recommended long term but it really helps me sleep (and not as strong as phenergan). My GP told me it's okay to take 2 loratidines and 1 piriton.

@Bambini83 sorry your GP was so unhelpful.

I’ve not had taste or smell since September last year after contracting covid. I’d resigned myself to not getting it back tbh. But i’ve started to smell stuff this last week. I’m wondering (hoping!) this might be a prelude to my taste returning? Anyone else on here who lost their taste and smell experienced getting smell back first?

@Moodgie I have had palpitations on and off (I'm just past 10 months now). It wasn't a major symptom until late May, when I ended up in A&E to be checked (nothing found, no surprise there!) and then saw a cardiologist privately (well, spoke to one, no face to face at the time). He sent me for a few tests and all checked out ok. Then it calmed down a lot. But it flares up periodically with some nights where I have palpitations that start in the evening then last all night on and off. I ended up getting a Kardia monitor from Amazon (cardio recommended it). One time it said possible atrial fibrillation but I emailed the reading to the GP who said all fine (they use Kardia at the surgery). Another time I thought I had indigestion but also felt clammy and nauseous. Indigestion wasn't relieved by Rennie and worsened then I thought I might be having a heart attack as was quite a bad pain in centre of chest. Was too chicken to call 111 after all the previous clear tests so sat it out and it passed in the end (couldn't face dragging the kids in the car to drop me at A&E as that's the only thing 111 would have advised). I assume it was just bad indigestion or another random pain as haven't had another episode...!

I have at times wondered whether the SOB and palpitations are caused by acid reflux /heartburn which has been really bad - but again it comes and goes in cycles. I had a gastroscopy a couple of weeks ago and that came back fine which surprised me given the burning and nighttime reflux. I have found gaviscon advance to be the most help @Bambini83 plus avoiding obvious foods (roast potatoes, quiche, anything vaguely spicy or tasty!) And avoid eating too late, prop myself up on a wedge pillow, keep water and gaviscon by the bed in case at night etc. Also have to avoid getting constipated as that puts upward pressure - it's definitely worse if my tum is sluggish. I have avoided prescription ppi (was given pantoprazole) as I have SIBO and think that would make it worse. I also found high dose vit C was making it worse so switched vit C.

Not sure if any of that helpful - all my symptoms have come in phases or cycles, just when I think I have solved something it crops up again. Hopefully you will each find some relief or answers soon. Good luck x

@seriouslynonames Thank you so much for such a long message!
Similarly to you, mine have started early summer, had an ecg and a 24 hour monitor which was fine as by the time I managed to get these it all started easing off. They came back around December and it’s a worry. I’m glad all your tests came back OK, hopefully it is still a symptom of the body being out of whack rather than any damage. Xx

@seriouslynonames thanks so much for the advice. I had a tachycardia episode in May but it was deemed that all was ok & put down to anxiety. I did have mild SOB for quite a while but it had all seemed to calm down.

I think I may well get one of those devices for peace of mind if nothing else. I sometimes feel like I get a stabbing pain in my heart. I’m reluctant to take what she’s prescribed - I emailed my nutritionist last night. She hasn’t told me not to take them but said once we get my stool sample results we can look at calming my stomach. I’ve lost weight on my new diet and even more now I don’t feel like eating as much. I seriously don’t have weight to lose.

Hi everyone,

I've been reading this thread and it sounds really difficult for you all. But I wondered if you are able to give me some advice? I'm not in the same situation as you, but it is getting on now.

It is 4 weeks today since I became symptomatic. I didn't have any of the main 3 symptoms, but bad cold symptoms and terrible fatigue. The fatigue is really lingering, and I also often feel very dizzy/lightheaded and nauseous. I am still getting some chest pain as well.

Ten days ago I felt like I was starting to feel better. I went out for a couple of short walks, have popped to the supermarket, and things like that. However the last few days I have got worse again. I haven't been out of the house since Tuesday and barely got out of bed the last two days. Even now, all I've done so far today is go to the loo and go back to bed, but I've been woozy all morning. I really want to get a shower today as well!

So last Monday I had a really important meeting via zoom, that I couldn't miss. I had to do some preparation for it over the weekend as well. Is it likely that I just really overdid it and my body needs some time to recover?

Also I'm going to speak to the GP on Monday. Is there anything in your experience it would be helpful for me to ask for or say?

[quote seriouslynonames]@Moodgie I have had palpitations on and off (I'm just past 10 months now). It wasn't a major symptom until late May, when I ended up in A&E to be checked (nothing found, no surprise there!) and then saw a cardiologist privately (well, spoke to one, no face to face at the time). He sent me for a few tests and all checked out ok. Then it calmed down a lot. But it flares up periodically with some nights where I have palpitations that start in the evening then last all night on and off. I ended up getting a Kardia monitor from Amazon (cardio recommended it). One time it said possible atrial fibrillation but I emailed the reading to the GP who said all fine (they use Kardia at the surgery). Another time I thought I had indigestion but also felt clammy and nauseous. Indigestion wasn't relieved by Rennie and worsened then I thought I might be having a heart attack as was quite a bad pain in centre of chest. Was too chicken to call 111 after all the previous clear tests so sat it out and it passed in the end (couldn't face dragging the kids in the car to drop me at A&E as that's the only thing 111 would have advised). I assume it was just bad indigestion or another random pain as haven't had another episode...!

I have at times wondered whether the SOB and palpitations are caused by acid reflux /heartburn which has been really bad - but again it comes and goes in cycles. I had a gastroscopy a couple of weeks ago and that came back fine which surprised me given the burning and nighttime reflux. I have found gaviscon advance to be the most help @Bambini83 plus avoiding obvious foods (roast potatoes, quiche, anything vaguely spicy or tasty!) And avoid eating too late, prop myself up on a wedge pillow, keep water and gaviscon by the bed in case at night etc. Also have to avoid getting constipated as that puts upward pressure - it's definitely worse if my tum is sluggish. I have avoided prescription ppi (was given pantoprazole) as I have SIBO and think that would make it worse. I also found high dose vit C was making it worse so switched vit C.

Not sure if any of that helpful - all my symptoms have come in phases or cycles, just when I think I have solved something it crops up again. Hopefully you will each find some relief or answers soon. Good luck x[/quote]

Hi @seriouslynonames
Would you mind telling me how much it was to see a cardiologist privately. I am considering it. I've been having shortness of breath, although only a couple of times a week. Had an ecg last week which showed an abnormality, nurse said it could be a mini heart attack. I am so scared. Waiting for an echo but I've tried chasing up with gp and cardiology and I am getting ok where. Bloods were fine.

Hi @OneTwoStep sorry to hear you're having a hard time. I'm very lucky that I have private cover through DH's work so I only had to pay the excess as the GP was happy to refer me.

I think an initial consultation is usually somewhere between £180-£250 plus the cost of tests. The tests are where it can get really expensive.

If you can afford it, and already have some test results you can share with a cardiologist, it might be worth an initial appointment just to get the quick view on whether any significant concerns - and if he/she suggests extra tests that may become expensive you have something to go back to the GP with to ask for a more urgent NHS follow up.

Perhaps as a first step (as usually you will need the GP referral to get a private appointment, although recently I have had appointments before my referral letter has arrived and no one was bothered, it may be more for insurance purposes) ask your GP surgery for a copy of your NHS referral letter from GP, your blood tests (even if normal) and the ECG if you can get it. Ask the surgery if they can recommend someone good locally (mine almost always can) and then call the consultant's secretary to ask about appointments and costs.

I am still not totally convinced my heart is completely ok given some of the symptoms I have had, so I understand how you might be feeling with what your ECG showed. I would hope that the nurse who looked at your egc would have said if she felt it needed very urgent review by a cardiologist, but if you can speed things up then definitely worth a try if it won't bankrupt you.

I had a very odd reading on the Kardia monitor when I was having what felt like severe palpitations and the monitor flagged it was abnormal. When the GP looked at the reading he said it was normal... Fingers crossed everything is ok - good luck getting to see a cardio. Take care x

@Fiadh79
I didnt want to leave your post unanswered.
I cant think of anything other than, I personally made a list of everything so I didnt forget to tell the doctor anything.

Hi all
Sorry I’ve not been keeping up much. Popping back with disappointing development, those on the Facebook group may know. Professor Paul Garner did an update blog on BMJ and he was on BBC breakfast...he has recovered, and it’s all down to the power of his mind oh and military fitness training. And he went on holiday and got dengue fever. The whole thing is bonkers. He’s basically joined forces with the forces behind GET and Lightening Programme.
He had previously internet diagnosed himself with ME/CFS as well as long Covid, so he’s now saying he’s cured of ME/CFS and everyone else could be...if they want.
So, so destructive.

I read about that @LetsBeSensible - it beggars belief and as you say could be very damaging.

I’m on an extremely low ebb over here. I’m feeling worse if anything than I did the past 2 weeks. I had diarreah again yesterday. Trying to eat bland food and keep hydrated. I feel breathless at times, very sore and achy with the constant sternum and upper back pain. I feel dizzy and weak. I’ve actually booked a Covid test for today. I know the GP said it would be too late but as I’m still having diarreah I’m now worried that I could be contagious.

My DH has taken it upon himself to have some kind of breakdown - accusing me of using the wrong ‘tone’ with him and not caring enough about him. I feel like I’m absolutely broken. Can’t believe he’s chosen this point to start these conversations. I was exhausted with arguing last night and didn’t sleep so the last thing I need. Already worrying so much about how I’m going to cope looking after DD this week.

I’m so confused as if this was a Covid (re?)infection I’m now day 16 from onset and feeling worse than I did at the start. It’s made me start to question if it’s just the manifestation of some hideous disease after so long being unwell. I look skeletal and don’t even recognise myself in the mirror. Sorry for the pity party. I hope everyone else is doing as well as they can.

Just popping in with a quick update really. I've got bloods and and ecg booked for Thursday to look into the heart rate issues. Had a bit of a flare up with the joint pain this weekend. I need to keep on at the GP I just feel a bit stuck at the moment

Sorry to hear you're feeling so awful @Bambini83. How did the test go? Any results yet?
Hope your DH has come to his senses, that's the last thing you need. Hope you start to feel better soon.

@amyj606 I know what you mean about feeling stuck, feel like I have plateaued and waiting to see if I can get a long covid appointment...

I had a horrible night with reflux (or something gastric) so have not had a good day with the home schooling today...

Hope February brings us all some improvements

@Fiadh79 don’t push through anything. Rest as much as you possibly can.

10 months in and my symptoms are all manageable.
If I do way too much the panicky feeling comes back, I go to bed early and it’s gone the next morning.
If I do a bit too much I get the sinus headache, a sore throat, stinging pain under my arms and the occasional chest pain. But it’s nowhere near as bad as it was. I can control it all with painkillers.
I’m off beta blockers as my tachycardia bouts seem to have stopped now.
6 months ago I never believed I could get to this point.

Thanks @seriouslynonames. The Covid test came back negative which was no surprise as it was so late. GP was supposed to be sending me a stool kit but that’s not yet arrived. Still not got my thyroid profile booked but I’m working on it.

My tummy has settled down to a degree - I’m reluctantly taking the Lansoprazole but she seems to have given me loads. She didn’t say how long she was expecting me to take it. I’m not going to weigh myself as it’ll just upset me but I can tell I’ve lost quite a bit the past couple of weeks and I was already at my lightest. Not feeling like eating much still. Trying to force down as much as I can.

Sorry to hear you’re still having a bad time with the gastric stuff. The current situation is such a nightmare.

I’ve started with all the neurological stuff again. Had the waking up suddenly gasping for breath last night. Weird hot feeling down my arms and tingling face. My heart is racing whenever I wake up. I feel like I’ve stepped back in time to early last year. Eyes are blurry. My tongue is awful - it’s been coated for so long and had been getting slightly better but it’s back to square one. My mouth is cracked and sore. To top it off AF has now arrived.

My DH hasn’t apologised as such. Things are tense and I understand it’s been hard for him too given it’s over a year of me being unwell with no actual diagnosis but it’s hard to feel unsupported and alone. I mentioned to my mum the GP thinks I may have just had Covid and I can tell she thinks I’m crazy. I just feel heartbroken to have taken such a leap back.

Hi all you long covid sufferers, I am on week 5 and can feel like I’m recovering for a couple of days, then start to feel ill again hot, headache, sinus pain, mouth feels yuk coated tongue, sore throat, and just generally weak. Did any of you feel like this after 5 weeks I feel almost as ill as I did at the worst point, then eases then comes again. I’m I still contagious do you think.

@Bambini83 there have been more times than I care to remember when I have taken a test as it feels like I'm back to square 1. It has always come back negative luckily ( @user1497873278 might be relevant to your question) but when I have told my mum that I've taken a test she thinks I'm bonkers. My parents both kept subtly hinting that it was all in my head or that I was literally worrying myself sick until the media picked up the pace on long covid and my mum's friend told her about her daughter who was experiencing similar. I have had relapses where I have been convinced it's a new infection and it wasn't but of course it could well be in your case.

I have had to continually make clear to my DH that on order for me to recover and be able to contribute more to the house, kids and life in general that I need proper rest - looking after 2 kids isn't ideal! He finally got that it was in his interests to listen to me and to let me listen to my body - he does plenty around the house and with the kids, the sticking point for us is the hours he works. If you haven't already it might be worth a try to approach it with your DH with what's in it for him - to support you in the short term so that things improve in the longer term - the longer he doesn't support you the longer this whole thing drags on. I think my DH was just burying his head in the sand but gets it now.

My period has massively messed me up a few times with major relapses so don't underestimate the impact it can have on symptoms.

I am having a crap day again today, chest tight and short of breath, gastro, low energy....

I hope you can rest a bit today.

@user1497 i did find symptoms really came and went. I thought I had recovered and had a separate illness until this kept happening and I read about long covid back in May. I couldn't test until the 3rd relapse but have never had a positive test, even with fever. So it's possible you are contagious but in my own experience I haven't been. Hope you feel better soon - the one piece of advice I will thrust on anyone I talk to who has covid is REST REST REST even if you think you are better. DO NOT return to pre covid levels of activity or start working out straight away. Give your body time to recover. Good luck!

Thank you so much @seriouslynonames. I’m so sorry you’re still going through all this too.

I think as I first started with symptoms late 2019 it’s hard for others (myself included at times) to believe that I’ve had Covid/Long Covid or feel that I fit in with all that. I’ve never actually had a fever. I get chills or feel hot/cold but no actual temperature. I had a virus late 2019 (not too bad) another March 20. My lowest point before this was last May. I’ve never been ok but had periods of improvement. I would say right now is the worst I’ve been throughout. It lingers at the back of my mind that I actually just have cancer or some other such awful progressive illness. I don’t get anywhere with doctors and I’m nearly sure my notes say I’m an anxious hypochondriac. My anxiety has peaked massively this latest episode. Before all this I hardly ever visited the GP as have been fortunate to be healthy all my life.

I had a chat with DH last night and I think he gets it a bit more or is at least trying but I just get so tired of consistently trying to justify my position. As I don’t have any formal diagnosis I just don’t think he gets it, my family and friends don’t either really. We have the financial pressure of me having to leave work and that causes further tension. Especially as I’m trying to self fund so many things to try and help myself. I’ve always tried to keep the faith but it’s getting harder and harder to do that.

I hear you on the resting - it’s so hard to do when you have kids. I only have one not two and luckily she’s not started school yet so I don’t have the pressure of homeschooling.

I know there are so many in this boat and loads of people worse off than me. It’s really helped to talk about it here so thank you again. Sending you much love and positivity.

Thanks @Crayfishforyou and @lightand

I had a really good phone appointment with the doctor yesterday. She said she'd do me a sick note for another couple of weeks, and I also have a blood test booked next week to look at my iron. She also said to talk to work about a phased return, when I do go back. And I've been resting a lot since then! It's funny right now I feel completely fine (I literally haven't moved from the sofa since lunch, except to go to the toilet once), but probably if I tried to make myself a cup of tea that might wipe me out.