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

Hello everyone, just checking in.
I’ve gone downhill a wee bit. Looking after a puppy and a kitten and homeschooling an 8 year old is taking its toll.
I’m hanging on in there though.
@Peggyslantern thanks for that, my long covid dr says the same thing. I have to learn to calm my system down. She said most people affected with long covid are previously very active, creative, often in a caring job too. There are ‘types’

I was the one saying ‘could it just be anxiety?’ And she was saying NO NO NO WHAT YOU HAVE IS REAL

My heart rate is a lot better since I started on 2 litres of water a day. I down a glass of water before doing anything active and it does help a lot. I haven’t had beta blockers for several days now.

I’m also on magnesium, vitamin d, zinc, an antihistamine which helps with the throat and head pains, paracetamol and the sertraline.

@amyj606 I’ve had the heart flutters. I wore a monitor for a week whilst it happened and the results were normal. It can be due to swelling internally around the oesophagus, hiatus hernias, an overproduction of acid which in certain positions or after certain foods can cause it.
I would check with your GP but in my case it was not dangerous and it has got a lot better over time

Thank you for the response! Its hard to describe its like I can feel a echo / ruttle when I breathe...I've got to book a follow up with the asthma nurse to go over my medication. I've still got a tight chest and pain in the middle of my back...but it could be my inhalers need adjusting. Its the dry throat too which drives me mad! I'm going to try and add some exercise into the mix and see how I get on

@Crayfishforyou sorry to hear you've gone a little downhill. I'm also homeschooling an 8yr old and distracting a 4yr old whilst doing so! Not easy but I've tried to let my standards totally slip so stress etc doesn't exacerbate my symptoms.

Was doing okay, but since yesterday have sore eyes, sore throat, aching limbs. Feels different to my usual long covid and now I'm trying not to stress that I've been reinfected - I had a hospital appointment last Tuesday that involved bloods and a 30minutes lung function test. And a train journey. Fingers crossed...but I haven't been anywhere else to pick anything up 😥

@amyj606 I’d honestly avoid the exercise, many of us on here have come a cropper after trying to exert ourselves back to health.

@givemeanother they are my usual relapse symptoms. My covid dr said it’s a flare up response by our immune systems to stress/exertion. But it feels like another bug.

I am able to do half an hour of yoga a day now, it feels so good

Thank you for the advice! I'm managing to get my steps back up so I'll concentrate on that firstly. I'm not back at work yet...I work for an agency in education and was given the option to switch out with still having issues. I'll see what the asthma nurse suggests and try and get a appointment with a doctor for some general advice. I keep drinking lots of honey and hot water to see if that helps the dry throat. Again thank you!

@amyj606 I have pain in the middle of my back. It’s seems to radiate from the lower Thoracic spine, T2 and T3. Interestingly these vertebrae are associated with the lungs.

@Crayfishforyou Sorry you’ve dipped a bit — it sounds like a lot of activity. It’s interesting that your dr made that comment. Everyone I have seen has simply say ‘post viral’. Did your Dr speculate on recovery?

[quote MillStone]@amyj606 I have pain in the middle of my back. It’s seems to radiate from the lower Thoracic spine, T2 and T3. Interestingly these vertebrae are associated with the lungs.

@Crayfishforyou Sorry you’ve dipped a bit — it sounds like a lot of activity. It’s interesting that your dr made that comment. Everyone I have seen has simply say ‘post viral’. Did your Dr speculate on recovery?[/quote]
I don't know the technical names but its the middle of my back and my chest feel tight too. Like if I stick my arms out it feels as if something is pulling. I don't know how best to describe things! Its the weird feeling when I breathe too like an echo or a flutter and either my throat feels dry or phlegmy. I just wonder if it'll all improve like will the weird feeling go and the dry throat...I know its minor really but I do wonder

@MillStone she didn’t say how long, but she did say I was improving really quickly. A lot of people with post viral symptoms take a couple of years to get where I am.
I have to learn to meditate and that will help my systems to calm down. I can’t do it yet, I’m really really bad at it

My relapse symptoms are normally gastro related and tight chest, fatigue. Nothing to do with the throat...or perhaps not for 6 months anyway, the first 4 months my throat was constantly furry...so who knows. All I can do now is rest anyway.

Did anyone have temperature spikes I’m on day 10, it feels like I’m not getting anywhere

@user1497873278 I never had a man actual temperature (though I felt hot a lot). From what I've read it's common to still have the temperature for a while. How are you feeling otherwise?

I had lots of temperature spikes. On and off for months, at the start of every relapse. Didn't always last long, usually less than 24 hours and only touching 38 degrees, no higher. Tested again each time it happened but always negative. This symptom has puzzled all the docs I have seen - made them all look for other sources of infection (none found). Seems to be quite a common long term symptom judging by the posts I have seen on the long covid Facebook group.

Hope you start to feel better soon x

@user1497873278 I have had up and down temperature for months, still get hot flushes (10 months). Are you 10 days after developing symptoms? Still very early and need to take it very slow and steady, rest rest rest

I’m days away from my ten months anniversary!
Optician was very taken with my eyes...they are not focusing well, not working together and the muscles are not acting as they should. Also my bad eye has improved since two years ago? He was quite surprised. The focus thing is common in chronic fatigue apparently. Won’t get a copy of the prescription for a few weeks apparently.

I need to book an optician appointment but I’m not sure I can walk from the car to the opticians at the minute.
Has anyone had the hoarse voice thing? Mine goes hoarse and weak if I’ve been talking for about 20/30 minutes. I rest it and after a few hours it comes back.
I’ve had a few good days but again overdid it yesterday doing a flat loop walk around the next street and feeling it on my chest and aching today. I got excited thinking I’d be back at work next week but I realise now it’s going to take time, especially since I talk a lot for my job!

I've today received a formal diagnosis of long covid from the respiratory consultant. Whilst it changes little in terms of treatment, it feels good to have it written down - confirmation that I've not been crazy given no positive test for covid (as I was sick pre community testing in March and didn't have antibodies 5 months later).

Such a long battle to get to this point, fobbed off so many times by the GP, but I have always found the hospital doctors to take the time to listen. Not sure if I've just been lucky or if that's normal!

Glad you’ve got the validation for your symptoms (brain fog might mean that’s not the right word). Hopefully now you have the diagnosis you get the right support. Have you been referred to a long Covid clinic?

@Indecisive12 thanks. I think validation is the right word!!

The consultant said he was going to ask the GP to refer me to a long covid clinic if I don't feel back to baseline in 6 weeks. That will be about
12 months since I was first sick...will see how I feel by then but right not I feel low histamine food and the supplements including niacin and quercetin are working well for me. I feel okay if I eat okay.

That being said, I partly want to go to a long covid clinic to share this with the doctors and see if they can validate it!

@givemeanother yes I think it makes such a difference to have that validation. I tended to have the opposite experience re GPs and hospital doctors. I know my GPs suspected anxiety in the early days (they were constantly suggesting ADs and talking therapy) but they were nonetheless attentive, open minded and polite, and have been fully onboard with Long Covid diagnosis for ages. I still get the rage thinking about the hospital consultant I spoke to back in April though - she categorically told me the only further treatment I needed was with a psychologist, and that all my symptoms were caused by anxiety.

I had a curious text message out of the blue today from my local hospital inviting me for a phone respiratory consultation. As I've not been referred for this (saw a consultant privately a few months ago) I can only assume this is the long awaited Long Covid clinic referral. In which case I'm already a little cynical... we all know respiratory is just one of a multitude of Long Covid symptoms. On the plus side though it's for 10 days time so not much of a wait.

I'm sorry about your ongoing eye issues @LetsBeSensible - it impacts so many different parts of our body.

Love and healing to everyone.

I feel bad contacting the GP what with the NHS on its knees.i get a text every few days from the NHS - don’t call an ambulance, don’t call the GP for a vaccine.

Hello everyone,
I’ve been struggling along since the relapse over Christmas with mostly just very bad fatigue/brain fog. It has been really getting me down.

I wanted to report though that I was worried that the melatonin I am taking could be causing some of the daytime brainfog, so decided to pause it as I’ve now been on it nearly 6 months!
Interestingly so far I’ve definitely noticed a clearer head and more energy.
I’ve also just started taking the H1 blocker prescribed by my GP - Fexofenadine. I was given it a while back but wanted the Niacin regime to sink in first...
It’s interesting too, I’ve got such a clearer focus and more positivity, more energy again. I’m now just unsure if it’s stopping the melatonin or starting the Fexofenadine that’s doing this but I’m reluctant to stop taking it to find out 😂

Fingers crossed this continues....

Wishing all of you well xx

@Moodgie I still have slight chest issues. Still get pain when exercising and on cold days. Plus if I get even a slight cold my chest really hurts and slight sob.

Had my Covid clinic appointment postponed (obviously). New appointment in March.

@Kitcat122
How did you get the appointment? My GP told me last month it would be only for hospitalised patients. I have a phone call with her tomorrow so will ask again.
I think my biggest worry now is the palpitations or rather irregular heartbeat, not actually sure his to describe it. Has anyone else still got that?

@Moodgie yes I still get the palpitations and ectopic beats in the lead up to and first days of my period . I believe in my case it's caused by mast cell issues as it's decreased since I started on the nicotinic acid, antihistamines and low histamine diet. Also gets bad if I'm stressed, but that's hardly surprising I suppose .

@Whatapickle78 glad you've had a return of energy. My guess would be the H1 receptor is making the difference but whatever it is, it's great news!

Has anyone seen this from the Zoe study - covid tongue has been identified as a symptom. Both myself and my daughter had this. I was even referred on the urgent cancer pathway to hospital dentistry to have a look at it...https://www.huffingtonpost.co.uk/entry/covid-tongue-explainedukk60016507c5b62c0057bc0be2?mccid=468d3a8f81&mcceid=3c0cc6c85e&guccounter=1