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

Hi everyone, week 11 for me today. I felt awful last week then had a migraine on Friday so was in bed sleeping for 36 hours and I woke up on Saturday feeling pretty good. I paced myself and felt ok ish on Sunday too. Then yesterday the breathlessness came back, today the pains are back, the fatigue is horrid today again.

I’ve been using the spoonie day app and am finding it very useful and have figured out what worsens the fatigue. Showering/bathing is a big one and I’ve found if I do this in a morning I’m useless for the day so have been doing it late afternoon so I can at least help homeschooling. I have an appointment tomorrow for the results of my further blood tests and chest x-ray. I’ve been ok with my voice since my migraine too but I’ve also avoided phone calls which seems to make it disappear, I’m waiting for my ENT appointment to see if my vocal chords are affected. I tend to get 5 minutes of voice for a phone call but it wavers if I raise it such as when giving my name at the GP surgery to the receptionist behind the screen.

I’ve found out my blood pressure is high so I’m monitoring that now twice a day to see if I need medication. My HR still spikes when moving but only to about 110, 80 when resting. I can tell I’m going in the right direction but I’m a long way from functioning well.

Hello everyone. I posted another thread about this but was helpfully directed here. I've not been able to RTFT but from what I have read I am so sorry to hear of so many of you struggling 🙁

I wondered if you had any wisdom for me. I had covid over Christmas and was unwell with it but not terribly so. I didn't have a fever, had a slight cough, lost taste and smell, felt generally unwell and tired. I had headaches to start with. This all lasted about two weeks and I got gradually better.

The fatigue seems to have carried on, which I gather is normal after a bad virus especially covid, but it is manageable.

The weird thing is that a few weeks after recovering from the main illness (aside from the fatigue) I started getting headaches again, feeling a bit dizzy most of the time, a bit nauseous, vague upper stomach aches. Nothing really specific that I feel I could pin down for a doctor. I sort of feel constantly hungover.

Could this all be part of covid/long covid? Or should I really go to the doctors?

Hello. New person here. I got Covid for Christmas and traded it in for Long Covid. I've gotten away quite lightly compared with many. Massive fatigue, bit of a high pulse and breathlessness, but that's about it. I can control it pretty well by loads of naps, laying down, and sleep.

Reading on here makes me think I should drink more water. Will up it tomorrow and see what happens.

@Fiadh79 Glad your doctor appointment went well. Yes, that was the nature of the beast for me too, for several months. Sit, feel fine[well, for a while anyway, then might need to sleep]. Move , and energy drains away.

@Indecisive12 Showering/bathing, gosh yes. A big event! I too did some "bigger" things later in the day.

@theroomisspinning, hello. Yes that was me directing you. I feel a bit of a fraud actually, as I am by no means a big fish on here so to speak, I have only been on this thread/site 1 month, myself. And in no way am I a big authority here. I just speak about what I know and experienced. I am one of the fortunate ones, in that I am nearly through it all.
Your last two sentences - I dont now. It could be part of covid/long covid in my opinion. And you might be wise to go to the doctor either way. Others on this thread, may be able to give you better advice than me.

@Mysterian. Hi and welcome.

@Indecisive12 @lightand Showers are the worst! We have a seat in the shower, which I use, but then I still have a rest afterwards, and need to sit down to do my hair.

I took a few photos today, just of some flowers. It was nice to do something other than just watch TV! Also had to walk to the garage (very close by) to pay for my car being serviced. I was going to do some very gentle yoga, but I think I've had enough stimulation for today. So just resting now.

Had my bloods and ecg today and I'll have a follow up review once the results are back. The odd dryness has more or less gone it'd just the joint pain and flutter in my chest and heart rate that's the issue.

Did anyone have an abnormal liver test? Apparently one of my blood tests came back abnormal when I was in hospital so the doctor wants to repeat in a month.

Sorry, should also have asked whether anyone has strange numb feelings in their fingers? It’s really weird and not something I’ve had before Covid.

Has anyone noticed an increased heart rate since having covid

@Soon2BeMrs

Has anyone noticed an increased heart rate since having covid

Yup.

At rest I'm 70bpm. Now I'm sitting watching cricket and it's 80-90bpm. If I so much as slowly walk to the kitchen for a drink it'll be 110+.

I'm trying to live quietly at home but my sports watch with a pulse meter keeps congratulating me for getting my target of vigorous exercise.

Hi all,

Week 48 now (March 2020)

I had an ECG & D.Dimer last week, just waiting for the results.

I have still got the constant tinnitus, fatigue, breathless and the lovely insomnia

I hope all are well.

Regarding heart rate, I take Bisoprolol for sinus tachycardia have been on for a few years now and my heart rate is very well settled on it (previously was 123 at rest) Anyway when I got Covid for a few days it was starting to race again when I exerted myself but it has settled back down again now, thank god.

@Mysterian
That's exactly like mine. I walk to the kitchen and my fit bit puts me into doing some cardio I had covid in September, ecg was abnormal (not sure why) so now have to have echo and bloods were all normal.

Have you been to drs?

Hello everyone in my 46th week
I’m still coping with my diminished symptoms.
I have a covid vaccine booked for next week and I’m a bit worried about it, has anyone else had one? I don’t want to kick everything off again

I am quite far down the list for one.No.

@Crayfishforyou, I have had 1 dose of the Oxford.

I was really worried about it, but stocked up on paracetamol etc. My side effects started about 14 hrs after the vaccine - headache, jointbpain, bit of a temp, flushed face on one side, then chills, & a slight sore throat the following morning. The worst part was severe nausea.

It reminded me only very very slightly of last year, but basically without sounding really dramatic I was so bloody amazed at how my immune system kicked in with the vaccine and did it all again for me, I honestly think it saved my life last year, so all in all I felt like crap after the vaccine but in a grateful way. I hope that makes sense.

To all of the lovely long-haulers that have been here since the spring. I’ve been getting chest discomfort/pain. Not a major thing for me throughout, but definitely at the start and then occasionally. Anyone still with any chest pain? Got a bit worried about reinfection actually but thinking maybe it’s just some aggravation due to overdoing it. Anyone similar?

@Moodgie, my chest has still been painful to touch, especially under the bra area, it actually feels bruised when I press it, so it must be inflammed. I use tiger balm on it.

My inside chest pain has reduced now, I was getting sharp pains on the right side until about 8 wks ago.

@ernieshere Mine is more like middle and more above my breast area. Not below or to the sides. Maybe more like heartburn would be? Never had heartburn though.

@Moodgie, I'm still on Omeprazole & Gaviscon (repeat prescription) due to GERD. Can you ask for some?

@Ernieshere I was given omeprazole before Christmas but wasn’t very consistent with it as didn’t see any difference. Or do you have to take it for a while for it to work?

Thank you for tagging me @Whatnext2018. I am sorry I haven't been on here in many months!!

I am 10 months into the Long Covid journey now....I would love to tell you all I am 100% better but sadly not however I am MUCH improved. Basic timeline is like this:

1-3 months - horrendous, acute illness, never had a day feeling moderately OK, a few hospital trips. Main issues heart related, headaches, exhaustion, SOB
3-6 months - A little better if I did nothing at all, myocarditis/heart inflammation showed up on MRI (but looked to be resolving).
6-9 months - Improved a lot, able to take daily short walks, look after children, cook, do lots of normal ish stuff.
9-10.5 months - I would say now that most days I feel 80%-90% ok / fine and if I pace myself all the time I can live a normal ish life. I couldn't commute to work or do anything like go for a run but I am coping with homeschooling 2 children alone, cooking, housework all mostly OK. I have the odd day when I feel awful (especially around my period) if I over-do it but overall not so bad. I can handle a lot more screen time and could work (from home) but have chosen not to with my children being home. I am basically left dealing with fatigue and intolerance to exercise with the exception of walking (manage 2 miles now) or yoga.

It's all been pretty shit but overall the trajectory is upwards and I look back now and realise just how ill I was.

I have worked very hard of stabilising my nervous system. I do loads of meditation and breath work which has helped hugely. I now have to just be very careful not to do too much, take regular rest breaks and be super careful around my period which seems an extra strain on my body. I also eat a low ish histamine diet and do the 'niacin stack' vitamin regime. I don't have any alcohol or Caffeine although I did have some champers at Christmas and tolerated it ok!

For those that remember my 8 year old also had long covid. She was ill for 7.5 months and then much much better. She's 95% now most days but still has a little chest pain on exertion.

Sending positivity to you all. This has been / continues to be one hell of a journey but I am confident I will fully recover eventually IF I can avoid catching it again!!!

Wow, what a journey it has been for you! And indeed it sounds like it's not over yet. It's good to hear you are getting better though.

I am getting better. I'm hoping to go back to work on a phased return in just over a week. But I really miss exercise. I have never been super fit, but have always been active and am worried that it's going to be a while till I can attempt to climb a tree/clamber over things in the park. Still, it's better to do what my body needs! I found a gentle seated yoga video today, which was nice.

Did anyone feel really shaky and/or dizzy when doing even simple tasks like make a snack? I’ve had both over recent days.

Feel a bit of a fraud posting here as I've only been ill for 7 weeks but really looking for a bit of support. I miss being able to breathe comfortably or wake up with energy or do simple things. The pain in my fingers is so bad now I can't even grip a jar to open it. Just sick of being tired, aching and getting breathlessness doing small things. I was back at work this week just two hours a day and I have had to spend all day in bed just to be able to function. Covid 19 sucks. The scary bit for me is the attacks where I can't get air in or out of my lungs for a couple of minutes. My GP told me off for ringing too soon as its not long Covid till 8 weeks and even then there is nothing they can do. Just pants basically.