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

I wake up with a headache every morning, hair still falling out. Some days I just have complete exhaustion and struggle to function.
RainOnMe79 I get similar aches and pains in upper back, rib cage. It’s horrible. I had a chest x ray but no-one has called to give me the results yet. Having blood tests next week for hair loss.💐 to everyone.

Just checking in, all on thread.
I thought some of us may be vaccinated with one or two doses by now. How’s everyone doing with that? I’m hoping that the vaccination may help with long term symptoms. I’ve only had first dose (AZ) with 24 hours of very painful aching flu symptoms as a side effect. I reported it to MHRA yellow card scheme. But since then no further obvious vaccine-related problems just the usual longer term post viral symptoms. The vaccine hasn’t yet made any inroads into my exercise intolerance or tiredness levels or palpitations and remaining low level breathlessness but I am trying to do more gradually. This ‘flu’ vaccine side effect very felt like when I had (unconfirmed) covid first time round and to be back feeling like I did then in March 2020 felt very upsetting. I was very frightened of feeling that same way for several days again or of being more debilitated after. Happily it passed quickly and I don’t feel physically worse now even if I don’t feel better. Emotionally it’s good to know it does pass. I will definitely take the offered second part jab.

Welcome BigGreen and anyone else new to the thread.

@BigGreen, sorry dont know anything about histamine.

@Fishflakes, I havent had the vaccine due to blood issues with long covid.
fwiw, my long covid does appear to have gone now. It took 10 months.

Hi
My adult Ds in his early 20s, had covid over Xmas. Since then he has been in a lot of pain with his chest.
He has been prescribed strong pain killers and anti inflammatories but they are not helping, if anything his pain is now worse.
Has anyone else suffered this way after covid, if so what have you done to help and how long did it last.

Bati welcome and hope his GP can refer him to a specialist long Covid clinic.

@Bati

Hi My adult Ds in his early 20s, had covid over Xmas. Since then he has been in a lot of pain with his chest. He has been prescribed strong pain killers and anti inflammatories but they are not helping, if anything his pain is now worse. Has anyone else suffered this way after covid, if so what have you done to help and how long did it last.

Has he been to gp or had any tests?
I feel the same, although some days worse than others, had chest X-ray, bloods and ecg which showed possible myocarditis

Anyone else had the vaccine and had an improvement? I had resigned myself to the breathless feeling and fatigue, the general aches and weirdness. Since having the vaccination (Pfizer in my case) I suddenly feel normal again.
I’m not sure if this will last but I’m happy that I’m feeling better.

Hi
Ds has been to A&E 3 times in pain, they don't do anything apart from listen to his chest and give him strong pain killers, which don't work.
His Gp has done ecg and blood tests last week. He phoned the gp practice today for results and both come back fine and gp had written that they didn't need to pursue the matter any further.
I have told him to phone back for an actually appointment and demand to be referred to a long covid clinic x

That's very exciting LaMariposa I'm so happy for you! I'm having my vaccination tomorrow and will report back. If it cures the crazy histamine issues I'd be so delighted. The kidney damage is done now so I've shifted to a largely vegan diet but having the histamine restrictions on top is just miserable. (Though I've now come off my anti-histamine and am largely managing to keep my symptoms at bay).

I hope your son gets that referral Bati.

forums.phoenixrising.me/threads/dr-david-tuller-prof-brian-hughes-and-steven-lubet-lessons-for-long-covid-19-from-a-changing-approach-to-chronic-fatigue-syndrome.83979/

Hi everyone
Just thought I would pop in and see how you were all doing. I was on the first thread back in March 2020 So nice see some of the long termers are starting to recover more. Now on my 14th month since I had the first symtoms and I am getting better every week. I have still not fully recovered my previous energy levels but it is improving. I still get days when I feel very tired and my back and lungs ache. I also find my joints ache and I get headachy quite a lot but I am working full time enjoying being back teaching and moving on. I have not acheived anything exciting but I am appreciating more the things that i can now do with ease. I was talking with my mum and she reminded me of when I got glandular fever when I was 16 and then again at 22 and I thought it took me about 9 months to recover fully each time. she correctd me and said the first bout it took 18 months to fully recover. So I think I am well on the way to full recovery now. Begining to think about exercising more and but a bit wary of setting myself back. For those of you joining the thread now as you are recovering please rest and take your time Give your body time to recover and take small steps. I think I hindered my receover by trying to do too much and I had some really big dips sometimes for no reason at all. These dips do get smaller and less frequent. I had a small one this weekend the first in about six weeks so i just rested , drunk plenty of water and ate healthy. Anything else can be picked up later Please listen to your body. I hope everyone recovers and has a good few weeks. Thank you to all those who supported me when I was really ill and scared You were a lifeline

I haven't posted for a while but so glad to hear some of the old posters have improved a lot.

I'm still experiencing the tight chest/breathing issues at 14 months now. I have to really pace myself but started a new position (temp thank goodness) and due to stress, have felt so much worse this last two weeks. Horrible throat and ear pains too so maybe it's a virus on top. I tried Perrin but got ripped off so I'm going to have to find a different practitioner. It did help with the neural back pain.

My long covid health provision has been woeful - one appt with a respiratory physio on Zoom with follow up appt cancelled until October!

So fed up.

Some articles relating to long covid here
meassociation.org.uk/news/

Hope everyone is OK...had a bit of a wobble today...I've started on a phase return back to work 2 days a week and its absolutely wiped me out. I'm trying to stay positive but its so frustrating. I'm trying not to fret too much but its hard going

Hi. I haven’t had covid but have had long covid type symptoms since my covid vaccine in January. Dizziness (gone now), tingling (gone), tinnitus (still here) and also insomnia. The insomnia is horrific and I’ve seen people on these threads and elsewhere suffer with it post covid. Any suggestions for how to help it? Tablets which make you drowsy such as antihistamines don’t work anymore for it.

@amyj606 I've just started back at work this week as well - it's hard, isn't it? Have you done both your days? What do you do for work? Please be kind to yourself! I had to phone my manager in tears yesterday about it all!

@JS87 insomnia is a tricky one! I use the Headspace app to help me get to sleep, and usually it does work. Insomnia has never been a huge issue for me until I got COVID.

Hi Yes I've found it really hard! I work in education as a Teaching assistant and I'm currently doing Monday and Tuesday...its absolutely wiped me out. I try to be positive and see the things I can do now rather than not but its hard. I got dead upset Wednesday about it but I'm booked in with the asthma nurse for a review and the doctors for a quick check in

I hope that all goes well! Are you doing full days or just half? And I can't believe you're doing consecutive days - I would find that too much! Would you/could you ask to do Monday and Wednesday (for example) instead.

It is really difficult. I work in a hospital, so another quite active job, though they've changed my role a little to make it easier. Everything I've read has said that the first couple of weeks are the hardest.

Have you seen these videos? They might help.

Hi all,
Can anyone give me advise on what to do next please?
My husband had covid in November and since then has been absolutely floored by every bug going, even hayfever!
GP says they have been told not to refer to long covid clinics locally as they are full.
They wont do blood tests or anything, I've never know him to be so poorly.
Thanks in advance.

Why won't they at least do blood tests? That seems weird. The LC clinic is shocking, but I suppose the way it is. Although by not referring people who need it are they not going to make it look like the service is coping when it isn't.

Anyhow, someone recommended that you ask for what you want, then get them to document that you've asked for it and they are refusing. I don't know if that's something your husband would be willing to do? Or can he go to the Practice Manager? It's so difficult with some GPs; I'm really sorry he and you are going through this.

@ScottishBeth

Why won't they at least do blood tests? That seems weird. The LC clinic is shocking, but I suppose the way it is. Although by not referring people who need it are they not going to make it look like the service is coping when it isn't.

Anyhow, someone recommended that you ask for what you want, then get them to document that you've asked for it and they are refusing. I don't know if that's something your husband would be willing to do? Or can he go to the Practice Manager? It's so difficult with some GPs; I'm really sorry he and you are going through this.

Thank you for your reply. He had a chest infection which floored him and they are blaming his hayfever on it being so bad which could be true but he's so tired all the time. Never really been well since covid. Our GPS are being really difficult at the moment.

[quote ScottishBeth]I hope that all goes well! Are you doing full days or just half? And I can't believe you're doing consecutive days - I would find that too much! Would you/could you ask to do Monday and Wednesday (for example) instead.

It is really difficult. I work in a hospital, so another quite active job, though they've changed my role a little to make it easier. Everything I've read has said that the first couple of weeks are the hardest.

Have you seen these videos? They might help. [/quote]
I'm managing to adjust to the 2 days...I've been off for 10 days isolating...and it's my final couple of days before the schools hols. Had a bit of a blip with the joint pain this week. I had a phone appointment with the doctors to see if they could offer any advice and they wouldn't discuss it until I've been for my LC referral! I rang the place up that is dealing with it in my area to be told its not running and they did inform the doctors back in May! I'm absolutely fuming with the lack of communication and the fact that the doctor wouldn't even discuss it!