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

In part three of his series on the ME/CFS saga, David J Black examines the durability of medical dogma in the face of facts and the risk of a new psychogenic orthodoxy prevailing with a generation of Long Covid sufferers, whose malady bears a striking resemblance to ME/CFS.

Hi there, please can join this thread. I have had both vaccines but caught COVID four weeks ago during the last week of term (I’m a teaching assistant).
I still feel like I’ve been hit by a bus when others seem to be getting better in a few weeks. I have been bed bound for most of this as I am so weak and my heart rate goes crazy if I stand up for any length of time. My other symptoms are gastric, a low level temp, incredible thirst and insomnia despite being so exhausted. My anxiety has also gone through the roof as I feel so awful and alone. My dr has prescribed diazipam but they aren’t helping me sleep any better and I don’t want to become addicted.
I’m making no progress and am so sad and not sure what to do.

I also have body aches and a cough/ tight chest although my o2 stats are normal.

People dont realise how bad you can be after covid.
My son caught covid 8 months ago and now lives in severe pain.
You mentioned really bad thirst, have you been tested for diabetes x

Thank you so much for replying. I’ve been looking back at these threads and have found them so reassuring. I’m supposed to be having a blood test tomorrow but I feel so weak, I’m not sure if I’ll make it - I can literally only make it to the bathroom from my bed I’m so weak. Had an upset tummy again today with headache and achyness, it’s just never ending 😕

@MissingtheSummer I caught covid end of november. Didn't need hospitalisation but was the sickest I've ever been. Sats were fine but it felt like my lungs were squeezed into a tiny box if I tried to do anything. Def had the racing heart rate standing up and walking around, worse in acute phase but lasted a good 5-6 weeks. This is very common.Had first shower at week 6, didn't feel breathless which was a revelation. Didn't eat properly for weeks either and lost loads of weight. Spent first 6 weeks sat on sofa whilst dp looked after me. After 6 weeks started to improve, returned to work at 12 weeks. I had a big relapse 10 days post 1st AZ jab, now slowly recovering.
Try to drink plenty of fluids - 1.5 to 2 ltrs a day, eat as you feel like it, have you contacted your GP re diarrhoea - you may be dehydrated hence headache and increased hr if it's being going on for weeks.
Get some dioralyte if you can to supplement diet. I got some complan in early stages.
I tried to walk round the sofa every few hours as I was worried about getting a Dvt.
I'd would really recommend ringing your gp if you are so thirsty. Are you on your own ?

Hi all,

17 months here, not posted for a long time, just wanted to check how some of the old timers originally on here are doing, hoping all better!
@fedupofbed @AndsLee @LetsBeSensible @TiddleTaddleTat @Whatapickle78 @MillStone @godhelpusall @KatySun @Kitcat122

Hi @Whatnext2018 it’s nice to hear from you! After my second Pfizer vaccine in early July, I feel pretty much back to normal again. Albeit with a much lower fatigue threshold, which means I need to monitor my exercise and stress quite carefully. I noticed an improvement after the first vaccine, but still had brain fog and quite regular fatigue. After the second, that almost completely went.

I feel extremely lucky, as I realise vaccines haven’t had such a strong effect on as many Long Haulers as we’d like,

How are you doing? I hope you’re seeing some improvement?

Xx

Oh you called...?
I’m not doing too bad lately. The last few months I have had a bit more energy. It’s all relative though. I can definitely go out twice a week, I can usually speak and my sleep has started to be more regular and less easily reversed.
I’m still waiting for my CFS appointment. I had my ENT appointment, they referred me for speech therapy but there is no service now due to Covid.
Time of the month is still a problem, I go right down and sleep extra hours. The sweating is still bad. Vertigo is only occasional as is loss of balance. The “vibration” has gone. I still cough when I get tired and get breathless out of nowhere. And I’m still fat.
Biggest change for me was getting PIP awarded so now I have enough money to live on!

Hi @Whatnext2018 how are you?? Hope things are going well, and thank you for asking!

I am slowly getting there (and learning so much more about myself on the way), what a journey! I still get symptoms - fatigue, heart rate not right and short of breath - but I'm able to do so much more now, and know that I'm moving in the right direction. My sleep and digestion are much better, I'm working 28 hours a week (from home but starting to phase in back to the office next week), I can manage a 20-30 minute walk. I even have the odd glass of wine 😊. Onwards and upwards 💪. What's helped me most I think is time, rest/calm and also I immersed myself in mind-body medicine/neuroplasticity. I get a lot of comfort and inspiration from other people's recovery journeys both from LC and ME/CFS.

@Whatapickle78 that's absolutely fantastic, so pleased for you! It's fascinating how the vaccine has different effects on different people.

@LetsBeSensible really good to hear there are improvements for you too, but yes it's very slow isn't it? And pleased that you finally got your PIP! Yeah, I'm fat too now, grrr, I'm like a little round ball. It's like my metabolism has completely changed - I think a combo of LC and peri.

@MissingtheSummer I've just read your post, and my heart goes out to you as you are still in the thick of it. You are definitely not alone, and many of us have had the same alarming symptoms. Keep resting, and if you're up to it, anything that will try and help calm your mind and body, such as meditation or breathing exercises - I appreciate that might not be possible at the stage you're at though. I think the virus has a massive effect on our autonomic system, which influences so many other functions of our body, hence the enormous and diverse range of symptoms. Sending love ❤️

Thanks for tagging me. I'm a lot better - I would say 90-95% of previous health. It was the AZ vaccines that seemed to make the biggest difference for me. I improved some 2-3 days after each jab. Still need occasional antihistamines and am much more sensitive to alcohol - wine seems to affect me badly these days. Fatigue much more easily and need more rest time after exercise but I've been able to go on hikes, and start running again. Can work as normal. So pretty lucky really.

Hello everyone! Soo glad you seem better. I am better. I work full-time, exercise am practically better. The only thing I'm left with is a reduced capacity for cardio exercise. My lungs do not like running. Can only run 1 minute on then one minute walking etc... Respiratory consultant seems to think that will eventually go.

@missingthesummer soo sorry you are at the beginning of this. Rest and have faith that we are testiment that you do get better but it can take time. Xx

Thank you for all your lovely comments, they are very reassuring. I am trying to be positive but it’s hard when I’m laying in bed all the time and my mind starts wandering and catastrophising over how bad I feel. It’s weird because I have lots of different symptoms and it’s as if they change during the day. I made it downstairs today and sat on the sofa for a few hours as it was my eldests birthday. It was hard work tho as I felt so weak and felt awful missing out on the rest of his day. The doctor has organised a blood test for Monday which will hopefully reassure there’s no reason for my thirst. I’m so pleased that most of you have made such a good recovery, I do get a lot of comfort from looking at your past threads as they really do reasonate and give me some hope x

Hello all, I'm Millstone.

So lovely to read your comments and see you're all doing so well. Such huge progress since this time last year. I have really improved too -- It's hard to say how much but close to previous health.

Lingering issues are occasional heart thudding and when I get really tired (eg after a very hard day) I get tinnitus and my breathing pattern goes a bit cuckoo.

The only advice I can possibly offer to anyone unfortunate enough to find themselves in the same situation as us is to rest assured you will slowly get better.

Continue to improve everyone x

I caught Covid in January this year and was hospitalised twice. Since then I’ve had burning tongue, pins and needles, breathlessness, headaches and significant hair loss. Over recent weeks I’ve developed chest pain, an ECG showed a possible heart attack but, after being sent to A and E for blood tests, they’ve ruled out heart attack and also pulmonary embolism. So they reckon it’s Long Covid and that my GP should refer me to Long Covid clinic.
Does anyone know if this type of chest pain can start after so long since I first became ill with Covid? When the pain wakes me in the middle of the night, it’s hard not knowing what it is and how I can make it better.

Hi there, I’m only nine weeks in so not sure as I have no long term experience but it’s all still so unknown that it’s possible. Not much help I know but I really hope you get some answers and some relief soon. Hopefully someone else will be able to give you some more advice. Xx

Thanks Missingthesummer. I’m sorry to hear that you’re still having symptoms. It’s really horrible, isn’t it?

Hello to the old lags on here. I was in and out of previous Lungs threads. I had a really good couple of weeks after the first jab this spring and had high hopes for second jab marking the end of long Covid. However I have felt worse again since then and currently signed off sick. Thank god for my very patient boss at work as I have been in and out of work at a very busy time. I am glad to see others doing better than they were and checking in occasionally. It’s great to read your tips on what you think has helped you. Onwards and upwards for everyone on the thread, i hope you will all feel a lot better soon.x

doctorswith.me/home/about/

"We are a unique authority on myalgic encephalomyelitis and those Long Covid patients acknowledged by NIH, NIAID and BMA narratives who risk progression to this neuroimmune disease."

I’ve now got my appointment through for Long Covid clinic so I hope to get some answers. Just wondering if anyone can tell me if they have weird symptoms that come and go? I can have severe aches and pains which feel like I’m getting the flu and then they disappear the next day. Two days later, and the symptoms are back again. Near constant headaches, fatigue which hits me so hard and then can go away before returning the next day. Very weird and I’m starting to wonder if this is all down to Long Covid.

Hello everyone.

I think I may be at the start of this.

I had what I'm convinced was covid in feb 20 and after about 4 months was better

Roll onto July this year and I get a covid-like thing, which despite 2x PCR negatives was just like it. I was ill for a few weeks and then was better (ish) for 2 weeks, then got hit with another bout of a similar virus (now diagnosed as RSV).

I've seen a consultant , had lung scans (clear) and bloods. She's a respiratory expert and convinced I've had covid and my current illness is LC plus RSV.

All of my symptoms are consistent with LC - racing heart, compressed chest, lethargy, shivers coming and going. Very hoarse chest and throat. I've been off work for almost 4 months now

I don't know why I'm posting other than to connect with others. It seems like some of you have it a lot worse than me though. It's a bit Shit isn't it ?

Hi

Thought I’d check in! I was doing a lot better but I’ve really struggled the past few weeks. I had a doctors appointment and have to go for bloods to rule stuff out with the joint pain. I asked about the long covid referral that they said they had done in June / July. Turns out they didn’t actually send it! I’ve rung to try and chase it in the past and just got told that it had been sent. I’ve noticed with the joint pain it’s achey and then I’ll have a sharp pain so I wonder if it’s a nerve thing

I’m having lots of aches and pains, lots of nerve pain it feels like. It comes and goes, frequently have headaches too. Fatigue is there a lot.
Chest pain seemed to have settled and then it started up again on Friday. There’s no rhyme or reason with this is seems. 💐 For everyone feeling the horrid effects of Covid.

Hi all, I’d be really interested to know how old you all are? I’m 40 and have not been right since I had Covid in March 2020 (not tested but pretty sure that’s what it was).

I still get chest pains that flare up and then can go away again. Costochondritis has been mentioned. Currently in a flare that has lasted a month. Also back pain, palpitations, constant slightly sore/hoarse throat, aching, joint pain, dizziness (also flares and then settles), brain fog. But not fatigue, which has made me think that these symptoms might be peri menopause.

I’ve had blood tests and was positive for anti-nuclear antibodies and slightly raised rheumatoid factor, so there’s obviously inflammation.

What I can’t work out is whether this is long Covid, menopause or some kind of autoimmune condition (possibly triggered by Covid).

I saw an article about how long Covid affects women in their 40s and 50s the most and linking it to low oestrogen. I’m now on HRT but no real improvement, especially in the chest pain. It’s only been a couple of weeks though.

So I’d be interested in how old everyone is and whether they’re menopausal/have any autoimmune issues.

BoPeeple I’m in my 50s and I completely relate to all the symptoms you describe, it’s horrible. I’m waiting to be seen at the Long Covid clinic in the New Year. Not sure what they can do but I’m desperate for any help. What worries me is if I get Covid again, will having Long Covid make it worse?