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

@Bambini83 Thanks so much for your feedback, so sorry you’re still struggling this far down the line, it’s so hard when you feel you’re progressing well and then suffer a big setback. So many of your symptoms/situation sounds similar to mine. Also think Dp must have had it in March, he’s not suffered as badly as mr and seems to have more of the fatigue and chest tightness/sob occasionally. Also think toddler Dd may have had it as she has a chest rash every so often and a little cough and lots of sneezing returns briefly, then goes, it’s all so odd.
I’m not sure if this heavy (well, heavier than they’ve been) period is causing these issues.
So you had the same but only for two days? All so odd isn’t it 🤷🏻‍♀️

@LetsBeSensible Yes, I’ve not heard of anyone either, thank goodness, just in the moment of it happening I feel as though I should maybe call an ambulance or something, it’s such an odd reaction.

I know what you all mean about the doctors and I’m always reluctant to go as I just can’t imagine we’d get very far. My main bill of appointments were back in May/June, obviously even less was known then, but they all just thought was v high anxiety and I knew it most definitely wasn’t! It’s really frustrating and hard to describe to them the myriad of ways the body is playing up, it just seems crazy to people!

No problem @Whatnext2018. Yep I basically felt like my whole body went into overdrive with the buzzy/tingling and had sharp prickly type feelings. I know what you mean about feeling like you should phone and ambulance. I just breathed through it and tried to stay calm. It was over New Year’s Eve/New Year’s Day and tbh I feared going to hospital. Literally lasted a couple of days then went. It’s so strange as me, my DH and DD all have bouts of random sneezing at times, no idea why. This latest ‘bug’ my DH had an upset tummy as well, DD just extremely windy/grumbly tummy (TMI)!

Tbh the only person I’ve suggested Long Covid to so far has been my DH and I think he thinks I’m crazy. It nice to be able to say it ‘out loud’ here without feeling like I’m mad!

Hang in there, I hope it passes soon for you. I’m still struggling with this SOB which is worrying me now - I know anxiety doesn’t help so I need to try and stay calm. My oxygen sats are fine, pulse up a bit but not majorly. I’ll have to contact the GP if it doesn’t calm down but I would really rather not!

@Bambini83 Yes exactly the same with my dh having an upset stomach, was Christmas Eve and day and he felt quite ill, it just seems like there’s always ‘Something’ for one of us (not so much Dd, but occasionally-also had very trumpy days!) don’t know how much is part of just normal things we would have had anyway or more 🤷🏻‍♀️

Prior to New year, were you doing much better? There’s been lots on the forums feeling ill recently and seems to be a 10 month relapse.

I know exactly what you mean - feel like me and DH have never been quite ‘right’ for such a long time but I’ve been much more extreme than him. So hard to say.

Yeah I would say I’d been better for the longest time consistently and felt I was about 70-80% normal just before I started with all this which was huge for me. So hard to imagine getting back there right now! My nutritionist said she feels it could actually be a good sign - I’m taking a homeopathic remedy she prescribed me and apparently it can be a good thing to have real improvement then a relapse. It’s hard for me to see it that way right now though!

Hello all,

I have come to ask for some advice about my DD15 and although I am relieved to see she's not the only one relapsing, how unutterably shit this is for everyone involved.

She got a virus back in March, i am assuming probably COVID (I got the blurred vision a la Cummings) although obviously too early for testing. She was bedbound for a week with headaches and dizziness, ok for a couple of days then she basically went back to bed for 2 months. She recovered over the summer but was left with post viral fatigue. She went back to school in September but ended up missing a lot due to extreme anxiety (although she's always been an anxious child this has been off the scale) .

We had a lovely (boring) Christmas with no anxiety and a few gentle walks out with friends but since 5th January her fatigue has really got so much worse. I've been scoring and would say she's gone from mainly 4-5 to 8-9 (out of 10). It's heartbreaking for me to see her in such a state and I don't know what to do. Am making her take a multivitamin with iron, and 1000iu D3, is there anything else people have found helpful?

We have been referred to Yorkshire Fatigue Clinic (hopeful this will be good) and CAMHS (not holding my breath) but it all just takes so long. My poor baby 😢

The only two things I have found helpful are
anything with chilli, and
anything with elderberry[that is elderberry and not elderflower]. Seems to help with the post viral fatigue.

Has anyone had cardiac difficulties as a result of covid?
I had covid in august, since then have been breathlessness and palpitations. I went for ECG today and nurse said it shows that I could possibly have had a mild hard attack. I'm so worried, although I probably wouldn't have knew if I didn't have ecg today. Any one had similar.

@Moodgie

Thanks *@Kitcat122*. Last time I spoke about it to my GP, she said it would be for hospitalised people. I have another ECG and blood tests this week and will speak to her after that again. I have also been having this chest heaviness that has been really frustrating as autumn time I thought my chest was fine. And now it feel like my oesophagus is squashed / tight chest - not sure how to describe the sensation. Anyone similar, after all this time?

So sorry to hear you feel like this @Moodgie. I am feeling similar to what you describe. Have you had ecg and bloods done?

@OneTwoStep
I had an ECG last week, and bloods.
I am meant to have a call as a follow up next week.
I already had an ECG and a 24 hour as well in the summer and nothing was picked up.
Try not to stress until you’ve consulted with your doctor.
I’m interested as well if anyone still had palpitations?

Hi @MotherBuckets your poor DD, so hard when she's so young 💐. I can really empathise as my fatigue levels are still very high too.

Have you been reading the thread for long? A few people have showed improvement following a low histamine diet, taking antihistamines and following a specific supplement stack. I'll repost this video as it is a good starting point and have a look at his other videos too if you haven't already.

I'm still loosely following this protocol but it hasn't had a great effect on me. I also just started an SSRI along with curcumin and boswellia. Other things I've tried are acupuncture and Perrin Technique osteopathy (which I've put on hold for now because of escalating Covid levels in my area).

If you haven't already I would recommend joining the Body Politic Slack group... it is a huge source of information and support for people around the world.

What antihistamines is everyone taking?
What are the best over the counter ones please?

@Moodgie I'm taking loratadine but not sure if this is the best. I just use supermarket brand.

@fedupofbed thank you. I did post on one or two of the old threads back in the summer (under a different name) but she was physically so much better so was feeling more positive...[hollow laugh]

I will have a look at the videos. I have been trying to get her a prescription for an SSRI but as she's a teen the GP won't do it, has to come from CAMHS, and they seem fairly unwilling too.

Hello @MotherBuckets
I’m under the Yorkshire fatigue clinic and Sue there is BRILLIANT. She has helped me so much. There is nothing about this she hasn’t understood, she didn’t scratch her head at my weird and varied symptoms and guessed most of them herself.

I'm not a sufferer but I work with children and have an interest in ME/CFS (education/SEN not health) and saw this today. Thought it might be of interest to some on this thread

It's evidence on long Covid in children being given to MPs.

Hi @Moodgie I was taking Fexofenadine prescribed by my GP and for a few days noticed a real improvement BUT it stopped me sleeping! So annoying, and as I couldn’t quite believe it, I had a break of a few days then tried it again. Nope, it’s definitely the Fexofenadine sadly, I don’t seem to sleep at all on it.

I had tried taking Cetirizine (over the counter) back in November which is also a non drowsy one, and this too caused insomnia.

So unfortunately I’ve had to stop.

I keep meaning to book an appointment with my GP to discuss as I’ve noticed taking one Benadryl at night means I wake up feeling a lot better, which lasts until lunchtime normally before the fatigue sets in. I don’t know if I should be taking this long- term though, or even if it’s the ‘correct’ antihistamine to take!

In other news, I had nerve conduction tests today with a neurologist which all appear normal. However, just having the tests (which are like mini electric shocks on my hands and arms) have caused me to crash. Came home shivery, exhausted, sneezing and dizzy. Hoping it’s not yet another relapse starting....

Hope everyone else is doing ok
Xx

I’m taking non drowsy antihistamines during the day and they help a lot. I still get headaches and congestion as my first warning symptom if I do too much. Non drowsy Benadryl keeps it manageable.
I was told I could stay on it long term with no problems

@Crayfishforyou oh that’s really good to hear! Maybe I should also start taking one in the day too and see how I get on. Oddly, even though the Benadryl is non-drowsy it does make me sleepy in the evenings, which is fine as I’m on my way to bed then anyway. But good to hear I’m not just imagining the improvement during the day from it if it’s helping you too. Maybe the only difference from the recommended (MCAS) antihistamines is we take it twice daily?

@Crayfishforyou

Hello *@MotherBuckets* I’m under the Yorkshire fatigue clinic and Sue there is BRILLIANT. She has helped me so much. There is nothing about this she hasn’t understood, she didn’t scratch her head at my weird and varied symptoms and guessed most of them herself.

That's so good to hear @crayfishforyou, thanks . The testimonials on the website are amazing but it's brilliant to hear from a real person too (assuming you are real ). We are in West Yorkshire so out of area but paediatrician and GP are being v helpful to get her in there.

I watched one of the videos last night and was encouraged (I think) to hear him saying 12-18 months for recovery. If I knew she would get better in the end it would be so much easier to bear. I remember when she first got ill the GP kept telling me just to be patient and she would get better. I really didn't think I would need this much patience...

Sorry to hear about those still struggling. I’m still not feeling any better and have started with really bad indigestion. I’m so bloated and belching constantly.l and feel very refluxy. I’ve been in touch with the GP today I hope I hear back from them soon. For those who have been taking prescribed antacids for a while was this because of abdominal discomfort/indigestion? Sorry I’m so behind the times with the treatments people are having.

Hi @Bambini83 Sorry you're suffering. Shortly after I fell ill I developed awful reflux for the 1st time. I'm unsure exactly what it was/is because it has never been properly investigated... but It was unbearable and I was prescribed PPI medication which I begrudgingly took for about 4 months. I'm still very careful with what I eat because I can feel it creeping back.

Sorry I'm waffling... but the point which is quite interesting is that when I started seeing a naturopath a few months ago (many months after stopping the PPI) I was diagnosed with having low stomach acid. Now I take a supplement to actually increase it slightly. I may have had reflux but the PPI medication was doing more harm than good because it was lowering my acidity levels even more and affecting my digestion.

If your GP suggests antacids or PPI, it might be worth getting a second opinion -- especially if you're suffering with digestion issues.

A lot of people have good results from Gaviscon, which makes sense -- it doesn't effect acid but it does stop reflux.

Hope everyone is doing okay.

Thanks @MillStone I have a GP calling me back soon. I’m already dreading the conversation tbh. I’m already on such a restricted diet and I don’t fancy what I have in the house so I’ve barely eaten so far today. I’ve tried nibbling rice cakes but eating makes me worse. I guess I’m just worried as I had palpitations and SOB and now this. Feels at times like I can’t take any more. Really hoping it’s an understanding and competent GP I get to speak to. Thanks so much for replying.

@Bambini83 good luck with the call. I know what you mean about the restricted diet — veggie and no histamine or reflux triggering foods. Means to an end for us all!

Thanks @MillStone♥️

Hi, just popping up to say, I’ve managed to acquire a separate illness! I was unwell with heartburn and fast heart. Fed up of the whole coved thing. Anyway ended up in A&E and I have gallstones! It’s kind of a relief because that’s something which can be treated and managed.
I feel like I have been ten rounds with(whichever boxer you like)