Long Covid support

[Disabrie22]

I had Covid early Feb and have not really been well since - exhausted, headaches, unable to exercise, sinus pain and dizziness. I think I might now have long Covid. Does anyone else have it and what can I do to recover?

For it to be classed as Long Covid you need to have had the symptoms for over 12 weeks after your positive test, so it might not be classed as Long Covid yet. In the meantime, have you seen the ‘Your Covid Recovery’ NHS website? Loads of useful stuff on there about covid recovery. If it gets past 12 weeks, you can ask your GP for a referral to a Long Covid clinic; most areas have them now x

I had Covid just before Christmas. I am just now, in the last couple of weeks starting to feel better. Weeks of breathlessness, brain fog and absolute exhaustion. But, as I say, just in the last couple of weeks, the breathlessness has gone. I am still very tired but nothing like I was. So, what I am trying to say is I know how awful it is but it can get better.

Also worth looking at the ME Association and Action for ME websites. (and think "pacing" rather than "graded exercise" - in fact avoid graded exericise)

I just wanted to say that I’m in a similar situation @Disabrie22, I was positive mid Feb, and am not well. I’m worse now than I was when I was testing positive. For me it’s fatigue that comes in waves, poor sleep, dodgy stomach and a strange head. I’m finding progress very up and down, definitely not linear and my mental health is suffering as a result. I work from home but have been on sick leave for a while and am now trying a phased return. My dizziness is hard to describe but it’s not like anything is spinning but my head feels very ‘swimmy’, that’s the best way I can describe it and it only started after I tested negative. I’ve had blood tests, had my ears checked etc My GP also said it’s 12 weeks before a referral can be made to a long covid clinic. At the minute I’m trying my best to eat well, stay hydrated, rest and take vitamins etc

This isn’t a very helpful response but I just wanted to say you’re not alone. I was interested when you mentioned the dizziness too as I hadn’t read much about that in other posts. I’m wondering if it’s a fatigue issue with me as my lungs and breathing seem fine. Wish it would just go away! Really hoping to see some improvement soon for us both. Best wishes

I had covid at Christmas and still feel awful now. I am however back at work I went back at the end of February. I still get the tiredness, cough spells and dizziness. Not sure if it will ever go. I got diagnosed with long covid in February after every single test going. I didn’t wait the 12 weeks.!

I’ve been diagnosed with an underactive thyroid since having covid in January, also being investigated for Rheumatoid arthritis

I’m sorry to break this to you, I’m two years in.

Went from running 5k a day, hadn’t had a day off sick in about five years, no health issues, had two jobs (you get the picture) to constant pain and fatigue, brain fog and terrible respiratory problems.

I’m starting to feel better. What helped?
Pacing - seriously, stop doing so much. Gave up an extra job, changed the other one to one with fewer hours and less stress.
Stopped running - I can’t now, I would be in hospital with my chest if I ran now.
Getting covid again - seems to have stopped most pain weirdly
Stopping drinking wine - very occasionally it would hit me like a ton of bricks if I had just half a glass. Pain so bad that I couldn’t move and gasping for air. So now I avoid it completely because it’s scary when it happens and not worth the risk.
Medication - the grey and red inhaler twice a day, montelukast and high strength antihistamine every day.
Changing my mindset - instead of being bitter about what I’ve lost, being grateful for what I have.

Long covid clinic was a total waste of time, I had one appt where they took a history and gave the link to the website above. Said they’d refer me to loads of places and didn’t do any of it.

18 months in.

you MUST pace or you could get worse.

I’ve tried everything and pacing probably makes the most difference.

most useful:

meditation (forces you to just STOP everything)
Doing as little as possible

otherwise you can join Long Covid on Facebook.

Hi OP

We're just moving your thread to the covid topic - there's lots of people here who have experienced similar.

Love and best wishes,
MNHQ

I’ve also got long covid from infection in early December. I’ve got tinnitus, bad nerve pain in my head, electric shock feeling in my body, headaches, insomnia and a strange anxiety feeling. It’s horrible. I was so blasé about covid, especially after being double jabbed (I wasn’t boostered when I got covid). Like one of the PPs, I was super fit, healthy and always on the go, and have literally had to shut down.

ive been referred to a LC clinic but not super optimistic...

@Wavygravy1 I was also diagnosed with underactive thyroid after Covid infection.

@Rispa42

sorry to hear you are still struggling. I’m also still ill though I’ve been pretty ill for about 18 months.

I also had the strange, anxious feeling but I’m happy to report that’s disappeared. In fact almost all of the symptoms have gone except for the ever present FATIGUE.

I have 2/3 tests per day (phone free!) just to get through the day.

I didn’t find the LC clinics that useful. Undiagnosed iron deficiency however was holding me back! Have you checked you ferritin levels? The Dr told me mine were borderline but I’ve felt lots (relatively speaking!) better since they prescribed iron.

I had suspected COVID back in December (PCR was negative but Drs convinced it was a false negative) and again in March.
I have been ill since December- tried working through it until early Feb when I just couldn’t get out of bed. I have a constant pain in my chest, extreme fatigue, brain fog, I ache all over. Recently I had two weeks in hospital due to dizziness and fainting, where they finally diagnosed me with POTS (Postural Tachycardia Syndrome) secondary to Long COVID.
I feel completely fucked over if I’m honest. I can’t move properly without becoming dizzy or fainting. I can’t work. I can’t look after DS properly.
No one seems to want to help. I’ve been given medication to try to control my heart rate, now waiting on seeing cardiologist again. GP can’t or won’t refer me to a Long COVID clinic, though it sounds like that’s no great loss.
I was so careful, followed all the rules, had all the jabs and now I’ve been left like this. I just can’t see an end in sight for it - in hospital the Drs did warn me that the POTS could become a lifelong disability. I’m trying to do paced exercise but the POTS is limiting that.
Sorry for the rant! Aim just so utterly fed up of feeling like this.

I am in the same boat. Have to wait a few more weeks for it to be considered "long covid". Speak to your GP, mine ordered some blood tests to rule anything else out and agree as PP said I was advised to look at pacing.

Did any ye with dizziness find it settled down after a while... 7 weeks in now

WLAH my dizziness settled down after a few months but other things came to take its place. Sorry not what you want to hear.

I think your dizziness might be a sign to do absolutely nothing… When I feel POTSy (and this applies doubly at the start of my period) then I drink salt water throughout the day and wear compression leggings / socks. I move really really slowly and avoid bending down / over or else it kind of tips into a horrible and long lasting headache.

Have you had your ears checked? Might be worth looking into.

ive been feeling so shit for so long I take any snapshot of time when I feel better as a win. Long Covid is brutal and more people need to realise how disabling it is.

I hope you all get some talc from loved ones.

Or even just some tlc!

Delta on November 1st last year. I've regained some of my taste buds and altered taste has improved (IE: beer tasted like garden peas), urine is still dark, fairly debilitating fatigue most days, memory loss is a big thing, ocular migraines are less frequent, sleep is so so (i was already an insomniac), hearing was affected after the first two AZ jabs, and has not improved that much, in my left ear. I seem to have developed permanently cold feet and had impetigo recently, which was mutant. Gone off lots of food, like I used to love fish pies, but not fancied them since, lots of weirdness around food these days. I have also piled weight on and unable even to go swimming, like I used to, 3 to 4 times a week, plus I used to walk miles and miles. I sleep a fair amount during the day, because I feel so fucked.

Between the side effects from the AZs (Pfizer booster was ok), covid and long covid since, I dont think I will ever be the same person again. The only people who seem to truly understand the situation are fellow post covid/ long covid sufferers and those from the ME/ CFS community.

I was already unwell previously, both mentally and physically, so I would hope my situation is not replicated across the board, alas it seems to be so, with some females I know also having enhanced issues with things hormonal.

You could be right.I possibly over done it at the weekend and Mon /Tue was particularly bad.
Yes Dr checked ears this week but thinks sinus infection now also

Mine went from can barely stand up to more lightheaded after a week or so, now 7 weeks later and it comes and goes, usually linked to how much I've been doing. Somethings definitely not right though as I keep banging into things like edges of doors when walking.

I’m another one with long covid and now have Hypothyroidism after catching covid at Christmas!
I have also been diagnosed with pots.

I have improved lots since December/January but I’m still nowhere near who I was before Covid.

For me, it’s the fatigue and brain fog which floors me.
I’d say, on average I have two good days a week. The rest of the week is spent recharging and just watching life pass me by 🙄

I’ve joined a few online groups and have tried every vitamin, supplement, diet, gadget, whatever it is going but have now accepted that I just have to wait this thing out.

Im eating healthy, making a good nights sleep a priority, very gently exercising, mindfulness & meditation and just looking after myself in general. Whether that is a long soak in a magnesium salt bath, painting my nails or giving myself a facial. All things I never bothered with before but have really helped to cheer me up.

I’ve learnt to accept the little wins as this condition is out of my hands.

Ugh, sorry everyone is suffering. I also have a thyroid condition.

@Fileexplorerrrr in a similar position to you. I’ve tried everything and have made recovery my full time job.

I'm really missing work and looking forward to when I can do a few sessions each week. Hopefully in the summer. My world has got very small. It’s hard to accept.

I struggle with school holidays even with reciprocal play dates etc because I don’t get enough rest and my kids hate ‘clubs’. Does anyone else get worse in the holidays?

IN case this is helpful for newbies:

Things that have NOT helped me:
-getting on with it approach ie ignoring symptoms (a total disaster- just got worse)
-Chinese medicine (thou it helped a friend)
-antihistamines (thou they helped an acquaintance, I just got sleepier than ever
-tiny calf muscle exercises to aid POTS (going to go back to this as it seems sensible & others with POTS say this helps. I just got too tired then pulled a tendon).

Things that HAVE helped:
-2 dedicated naps a day
-‘buffer’ days to make sure I don’t do something two consecutive days
-compression leggings and socks
-increasing salt (less headaches & dizziness, palpitations)
-nighttime showers & then only every 3 days. Lifting my arms above my head to wash my hair wears me out for the rest of the day. Skipping conditioner or ‘leave in’ conditioner.
-shower stool. Utter life saver
-gluten-free diet (bit more energy, no other impacts, possibly less headaches)
-not finishing everything I start. Frustrating but this is a long game after all
-meditation (helped the body stop buzzing and fizzing)

be good to hear others’ hacks!

@jimbobalot We sound like the same person, even down to what does and doesn’t work for us!

Compression socks have been the Best Buy so far and I swear by the salts.

Like you, I’m hoping by some miracle I can get back to work in the summer and start a bit of normality again.

The holidays I think are harder because of the pressure and the guilt. I have spent the whole year so far feeling so guilty for not being the Mum I was before. Luckily my son is 13 and as long as the Xbox is working, he’s not bothered but it’s a horrible feeling.

I don’t know about you but I just feel trapped. I took my health for granted before but this has definitely taught me a lesson. Without good health, you don’t have much!

Oh and a weighted blanket!
This has been great for helping get off to sleep and to ease the achy legs.

@Fileexplorerrrr I also have a weighted blanket 😃 Great for quickly making you feel really relaxed! It’s weight means it’s tiring to haul around the house though 🙄.
I could have written the rest of your post. The guilt is awful. I really miss doing day trips with my two and feel sad they’re missing out.

I don’t think you ever appreciate your health until it’s gone sadly. 😫

I don’t love my compression socks, they could be tighter. Where did you get yours? I’m thinking about getting a body suit thing as well. It’s not like I’m ever warm so should do for some of the summer as well…?