COVID long-termers 14 weeks+

[isitorisntit]

Welcome all. I'm sad that many of us are still here but at least we have each other. The other thread is full, hence this new one.

Welcome anyone else who is struggling with a long recovery from COVID. They're a supportive lot, here.

@godhelpusall Yip, what do you need?

@AndsLee how do you fancy representing on bbc Scotland?

@AndsLee how do you fancy representing on bbc Scotland?

Not the first time...
PM me what you're proposing...:)

@AndsLee call me stupid but hoe do you dm on mumsnet app

to all those feeling down today. The weather isn’t helping either is it...
Unfortunately another similar report back from my GP today. She and colleagues haven’t heard of Post-Covid clinics at all
I do hope they actually happen.

Anyone know? Pm on mn app

I am so fed up with everything. I just feel yucky and off. I’ve been worrying today that I’ve actually caught covid again, but figure that’s fairly unlikely as I’ve not been anyway. Maybe I’ve just got a regular run of the mill virus! I don’t have a temp, but I do have general aches and pains, indigestion, start of a sore throat. Early night I think.

@godhelpusall you found me!

A wee update folks...

I am about 3 days into my 2nd proper period since becoming ill in March. The 1st was is May, and it was brutal.

This time, as per the virus's MO, the symptoms I experienced last period are there, but milder. I feel hot under the skin, but no sunburny rash. Headache, but no blinding headache.

My glands feel more "up", and the breathing through dust sensation has morphed to match a more "swollen glandy" pain. I'll take that anyday, because at least you can tell what it is!

I seem to be able to tolerate Esomeprazole now, having swapped out the Ranitidine. My god what a difference! Heartburn has gone. Like...actually gone. My stomach grumbles occasionally, but I think that is glandular. Bit of tinnitus - glandular. The laugh is, I am now booked in for a stomach ultrasound!

I'm also having a precautionary ECG on Wed, just to check. My heart rate seems a bit low.

Found this:
www.nature.com/articles/s41591-020-0968-3

Kinda goes with the overreaction of the immune system theory.

My lasting symptoms I think are all lymph node rooted. Makes sense really. I'd still say I am 85% there, accepting the period minor blip. Did a full day's actual work today, in work. Can't have swollen glands forever, so this will pass. Still keeping the faith. I feel my ailments are now more... Normal? Run of the mill? Does that make any sense at all...?

Love to you all xxx

@fedupofbed that’s the attitude! What a lovely pic
@AndsLee ooh you’re famous! I am hopeless! I only JUST remembered I’ve not been body brushing! It’s supposed to aid lymphatic drainage of some such. I actually thought it helped me in the past, could be nonsense but worth a go. I’ve packed my brush away at some point, must go dig it out...

SInce we are all mainly monitoring this thing ourselves and helping each other along.
What should we all be testing for/keeping on top of at this stage do you think?
I’m having a chest x ray on Wednesday and another Ecg (first one fine 9 weeks ago) but I have low heart rate at times and want to double check. I’ll also get another D-dimer.
Does this all seem over cautious or is there actually more we should be doing?

Hi - I have been following for a few threads but not posted, so I hope you don’t mind me posting now.
I had all the symptoms of Covid 19 late March and into April, but no tests available at that time, I had in fact gone to the dr before lockdown with an awful cough, and the Dr was happy to see me. Diagnosed with a bacterial infection from a lab sample. I have never felt so ill as I did then. Had 4 nights when I had to sit up due to inability to breathe lying down. But no Dr was interested to see me as was not ill enough. I was given an inhaler, spacer and steroids over the phone plus more antibiotics.

Have not felt well since, but thankfully working from home. Breathlessness and fatigue main symptoms.

However, have had a really sore chest on one side. Last week was sent for a scan/x-ray, which picked up inflammation. Probably from the amount of coughing causing the pain in the chest and/or inflammation caused by probable Covid 19.

@Whatnext2018
Hard to say, because everyone's experience is slightly different.

I had bloods taken a week ago. Cell count, vitamins, kidney & liver functions, thyroid, diabetes, etc etc... all normal except cholesterol is a bit high. My bad, been eating butter. On paper I am the epitome of health. So my take is, my body is over reacting, it isn't pleasant, but it will stop it's temper tantrum when it realises it's fighting an already defeated enemy. I am certain the symptoms are becoming more explainable and "normal" as we progress.

I am having a couple of investigations happening soon, to check for damage. My thoughts are, if at this stage they are favourable, I'd be inclined to accept that that is unlikely to change. I'd look for a repeat if any new symptoms happened to crop up. Tis my plan.

@whatnext2018 it’s hard to say. The pic on the article @andslee posted just lit a lightbulb in my brain, it said about liver issues.
My standard battery of blood tests showed raised liver results. Last full bloods was Sept 19, they were fine then. C19 can cause raised something liver. So maybe this is where my c19 has made its mark.
I never was a “can’t breathe at night” so my lungs are probably ok. I don’t think I really need a chest X-ray. Seems my liver may have took the hit. Luckily I could not drink booze just now, even if you paid me.

Hello RhubarbJelly I am sorry to hear you are suffering as well. I had to sleep sitting up as well for a good while. It is grim. I think the threshold for being ‘ill enough’ for medical attention at the peak was pretty high. It is also frustrating not to have a proper diagnosis. I was diagnosed clinically when I did finally get to see a doctor as at that point I did not meet the criteria for testing.

Today’s joy is a migraine as well as the chest pain, which has re-surfaced. It had abated for about a day. I triggered it by running. I managed about ten metres the other day so yesterday I tried for about twenty and had to stop because it was sore. Not got the results of my chest x - ray although I guess I am expecting it to be clear and to be told there is nothing wrong 🤷🏻‍♀️

Good to see Long Covid getting some airtime on BBC news on the TV this morning! Long overdue (excuse the pun)

@fedupofbed . There's not a lot we can say to make you feel better but hopefully you know we are all here to hand hold each other. I think as a pp said, it might be worth trying AD's for a short while but it is rubbish that this situation is making us depressed and anxious and helpless. Hopefully a post covid hub will be in your area soon and you can get some support.

@AndsLee & @LetsBeSensible Yes, it does seem to target different places on each of us 😬 what further investigations will you have @AndsLee?
I had tests 9/10 weeks ago and all ok but of course I’m paranoid things may have changed, but to repeat them all, can only do private and will cost me a small fortune 🤷‍♀️

@fedupofbed How are you feeling today? Just wanted to check in on you 💐

@Whatnext2018

Referred for an ultrasound on my stomach. ECG booked for tomorrow.

@Lightsabre thank you so much 🙏🏻, you're so kind. I hope you've had a good day today.

Thank you also @Whatnext2018 . Regarding tests, I'm not planning on anything further right now. I did ask my GP last week if she thinks I should be referred anywhere further (cardio, respiratory, etc) and she's suggested a CFS referral, and also possibly rheumatology. I'm just waiting to hear back - seem to have spent the last 4 months 'waiting to hear back'. In fairness though, I did have every test under the sun much earlier on, including a CT scan.

I've been mega tired today so not even made it downstairs - I'm just listening to my body. Stayed in bed watching Desperate Housewives which I never watched first time round! Heart rate is still all over the place and still SOB in an 'air hunger' sort of way. DH was back in the office so been relying on lazy teens to heat up soup and bring me tea 😁. I've felt mentally stronger today though - absolutely no idea why but enjoying not feeling sad! My Chinese herbs arrived in a box today- they're in little sachets and everything's written in Chinese... all very mysterious. I'm going to have a chat with my practitioner before I start taking them.

@fedupofbed glad you are feeling strong mentally!
I would suggest to anyone having a “sick book” - not envy
I have a cheapo A5 hard back ringbound bible of all things medical- appointments, supposed followups by whom and in what timescale, a two week diary of symptoms as a snapshot, adaptations I’ve made (even making a flask of tea and bottled water by my bed as I can’t get up)
It’s handy all in the one place, take it to appointments so I don’t forget what to tell them, write out questions to ask at appointments.
Word to the wise mine was bought when I felt down and it’s covered in cartoon unicorns, I’d go for plain next time!

Hello Long Covid group,

I haven't had C19 yet, but already have CFS and really quite scared of what would happen if I got it. Trying to decide whether to send DS back to school (bubble of 30 sneezing/coughing kids come November?)

I wonder if there's any difference in male/female long termers?

There appears to be in CFS/ME which manifests some similarities to long Covid. Auto immunity in women is different - so possible that and hormones could influence persistence.

Mitochondrial function could also be implicated.

Anyway - Just thought I'd come and give you a wave and say - I do totally understand. Do rest as much as you can, work on being calm, do a little gentle exercise if and when you feel able, and ignore anyone who says unhelpful things. I was fit and healthy before CFS hit and I have learned all about pacing etc the hard way.

Hi
I just thought I would drop in. Returned to work full time last week teaching. Was fine up to Friday happy but very tired and my body ached. Back at the top and my wrist and finger joints. Slept over 12 hours Friday night. This week finding it a struggle sore throat back and now a sore tongue. My mood has dropped as well and feel quite tearful.

So many names I recognise on here and all still suffering in different ways. I wish you all well and know how you all feel at just wanting to be back to normal. I an now on 120 days. Husband who is on 106 days still gets breathless especially in the evenings, has sinus problems sore throat and has various pains in his chest Had odd pooping I his ears which we thought was the sinus problem starting to resolve. Now taking an inhaler for the first time ever and now has decided to contact the doctor in the morning as he feels enough is enough. He is going to ask for a chest xray and something for the sinus problem Luckily he had a blood test a few weeks back to test his kidney function and that came back as at the levels expected for him. That was a relief. I think he will get the chest xray as they use him as a guinea pig as he was one of the first children in the early 1960's to survive his condition and they are like to monitor his condition. He is however fed up of shielding as well which does not help his mood and actually did nothing to stop him getting it although he was not tested at the hospital when taken in and then sent home. the doctors were sure he had it. Trying to be positive but finding it hard at the moment
Wishing you all a better day

I’m week 18, I can’t be sure if this is a relapse so I am asking if anyone else has a runny nose constantly clearing their throat, chest and back discomfort, dripping with sweat though a normal temperature and an unsettled stomach. I think I over did it on Saturday and have caused a relapse thought with reports of possible reinfection I am concerned that this may be the case. I did a bit of painting on Saturday and wonder if it's caught up with me.

Hi @Meercatmama and @pinkoneblueone how is your little one?
Thanks for calling in @kisstheteapot14 don’t get covid! It’s like CFS++