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

@Whatnext2018 thanks for updates.
It's been nearly 5 months since I tested positive and i seemed to be okay for a couple of weeks and it's back again with similar symptoms to you dizziness, foggy headed, diarrhoea, some chest and heart area discomfort. Have you had any tests from GP?

Week 8 for me
Feel like I will never have energy again
Awful bastard virus

As a relative new poster on here (I had covid mid October) its so lovely and encouraging to see people getting there to a full recovery. I've had a bad couple of days with post covid stuff (joints and weird breathing through dust) doctors are running some tests and then looking at a referral to a long covid clinic. I take such hope from the stories of people getting there 🙏

Caught Covid start of January and went out for a short walk today for first time since the start of illness as I have been quite unwell with pneumonia too. After walking for about 10 minutes I got a pain in my right side of chest which I could also feel at the same spot in my back. I’m wondering if that could have been pain from my lung? I’m due to have a chest x ray next month to assess any long term damage to lungs. Now tonight I’ve started feeling really achy, headache, muscle pain, painful glands in neck and have come to bed early. I’ve now had my first vaccine two weeks ago so I feel fairly reassured that it’s not Covid again but I’m wondering if this is what everyone calls long Covid? Or maybe my body just was t ready for the walk today. Who knows! 😳

Should have said that I’d actually felt like I’d turned a corner over last few days energy wise and just feeling better and then this happens today. Is this a fluctuating thing once you’re beyond the initial infection?

@Dogatetheleftovers what you describe is a classic way long covid has presented for many of us. In the early days feeling better so going and doing something and then coming down with symptoms again and repeating again and again. It's disconcerting how one can go from feeling normal to it all going again.

I would prescribe rest, or doing less than you think you can do as a way to try avoid the symptoms.

Thank you givemeanother for your advice. I’m sorry if you’ve had a difficult time after getting Covid. How long since you first were ill?

Hi, I’m week 15 or 16 here. I just wanted to say that getting on top of the fatigue has been major for me. I use the spoonie day app and pace activities through the day. I’m having speech therapy as my voice has been affected and a session yesterday led to me needing 4 hours of rest after and my pains worsening. A lot of my other symptoms seem to be improving but I’m very restricted in what I can do in a day. It’s pretty much a shower, watching tv on the sofa and twice a week a walk of about 400metres. I sat on a stool and stirred some soup at weekend whilst it was cooking and that was exhausting! I had the Oxford vaccine 3 weeks ago and felt awful for a week but then I think I have improved.

I knew it! I have been saying this allllll along!! We need an antibody boost!!

www.thetimes.co.uk/article/vaccine-may-ease-long-covid-suffering-th8dvrqht

@AndsLee May prove great. May prove to be a short term boost. Who knows. Long covid is a rocky road. Even just reading the few posts above, shows that energy levels fluctuate a lot at the best of times. Lets hope they find out a lot. And I would hope that some of that research ends up helping those with ME too.
And helps cfs in general.

@AndsLee so glad you're pretty much recovered now! You've been such a help on this thread for so long - a big thank you.

Just a little follow up after my vaccination last Friday (Oxford AZ) as it's now nearly a week. My initial side effects were consistent with the general population (headache, grotty, sore arm) and I haven't had a relapse of any of my Covid symptoms. I am feeling a little bit better this week, but not significant or prolonged enough to attribute to the vaccination. Let's see how it goes though...

@Dogatetheleftovers 11.5 months for me, I was first mildly sick in March, then better other than odd grumblings but then became very ill in June after going for a very intense run. I didn't even think I had long covid (or even covid as no testing in March) as nothing was known about it then. In hindsight I'd have taken time off work to recover which I never did.

So I really hope for everyone who caught covid later on your recovery time will be quicker as at least it's recognised now. And it's worth trying low histamine as seems to work for quite a few.

@lightand
Let's hope there IS lots of research. Though as the folks here know, I didn't fall into the CFS camp, my symptoms were far more MCAS-ish. I never had the crushing fatigue...thank God. Right from the get go though, I felt that there was something about our antibodies, or lack thereof. I may be right, I may not, but my gut feeling is that there is a link, especially since so many of us had negative results on an antibody test.

*have tested

@fedupofbed
Awh you take care missy! You've had such a shit time with all of this! I am glad things are starting to improve for you xxxx

DH and I both have long covid - he’s had his vaccine today so will wait and see if it makes any difference to him.

My DH was like you @givemeanother - he initially thought he was fine after having a mild case of covid in March last year and was fine all the way through to September when he pushed himself on a run (he’s normally very fit) and he hasn’t be right since.

Thank you Andslee
I’m happy to cling to anecdotal hope these days- appreciate the post

I’m having the jab on Saturday. I’m hoping that it might actually make a difference, because this has been going on for over a year now. As it has for a lot of others here, too, of course.

It’s encouraging to hear from people who really are getting better.

Another update I've had a referral appointment for infectious disease / long covid through for a few weeks time

@amyj606 - how did you get your referral? How unwell are you?

My GP took bloods (normal) and said ‘yeah sounds like long covid, nothing we can do’. I told GP I could still do desk based work and look after kids but was stopping me doing any more than mild exercise (like a gentle walk), for a year now. I was hoping I might at least get some more advice.

I know that many of you have described long periods of feeling unwell/long Covid symptoms but does anyone have more short term symptoms? Mine seem to come and go where I’ll have a few hours (up to say 12 hours) feeling ill and the it lifts for a while.

@Bubbinsmakesthree It was the doctor who referred me after bloods and an ecg. I've got at home monitoring to do for two weeks. I've been off work since October and haven't been able to return. I work in Education as a TA with SEN kids and I just wouldn't manage the demands of the job. I've got joint pain, fatigue, heart rate, breathlessness etc.

Gosh this is so scary reading how it can affect so many of us
Damn you long covid
I usually find the evenings worse
Zero energy
Not pushing myself back to work
No way
Just need to rest rest rest
Love to everyone in this boat too

Interesting article. This closely describes my experience!

www.dailymail.co.uk/sciencetech/article-9346535/Rare-heart-condition-one-long-term-effects-Covid-19-scientists-warn.html

Could be coincidence but after getting slightly low iron results in my latest bloods I’ve started taking spatone on top of my regular multivit + iron and I am feeling the best I have felt in some months - more or less ‘normal’ over the last few days.

I have peaks and troughs so it’s hard to be certain about anything but I will definitely be keeping up the extra iron and see how it goes.