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.

By the way- how many on here have children with long Covid?

Thank you @Lightsabre

@fedupofbed I get all of these sensations too and along with everything else breathing and heart related have suspected autonomic issues for a while. Everything is out of sync and jumbled up.

A few weeks ago I was assessed by a lung physio and a rehab physio and during the assessment I enquired about Autonomic Dysfunction. After a few light exercise, blood pressure and pulse tests, they said due to the strange results it’s quite possible.

I found out yesterday I’ve been referred for a tilt table test to investigate it further. I suspect they’re looking for pots.

Breath guided movement really does seem to help my heart and breathing but I found I need to make sure to keep it gentle so it doesn’t cause chest/back pain or cause a relapse.

The fine balance is so frustrating ... if this fatigue would lift I’m sure the rest of these breathing and heart issues would subside or mend with the right rehab.

@Lightsabre sorry your parent is unwell

Thank you @MillStone and @fedupofbed - this is turning into the worst year of my life...

@MillStone our symptoms are very similar, and I agree that everything is just completely out of sync - if only there was a switch on the back of our necks to make it all better again!

I'm quite impressed with the care you're receiving - although no one has the answers at least they seem to be trying. I just seem to be languishing in the shadows. I've booked a private appointment with an ME CFS specialist but that's not until September. The ME Association have just released an update - I've only scan read it so far but it seems to be an excellent summary.

meassociation.org.uk/2020/07/update-post-covid-fatigue-post-long-covid-syndromes-and-me-cfs/

I'll keep going with the bed exercises and walks around the garden. It seems very chicken and egg with the fatigue and heart/breathing - I often interpret it as the body is just cripplingly exhausted because it's in overdrive as a result of the increased sympathetic system activity/ heart and breathing regulation 🤷🏼‍♀️.

How's everyone's sleep now? I'm getting about 6-7 hours but still lots of waking up in the night - not sure how productive it is. I'm about to order a Fitbit so I can monitor my heart rate and sleep better - I know others on here have sworn by them... any recommendations gratefully received.

@Lightsabre yes 2020 has not been great so far 💐.

Another thing I'm doing which sounds a bit bonkers is Wim Hof cold showers. I'm up to 40 seconds at the end of my bath now. I find it quite invigorating and certainly no adverse effects. I'm too scared to try his breathing exercises yet!

@fedupofbed Yes I had that everyday for weeks a couple of months ago, before I really knew what was going on, hence why two doctors said it was just high anxiety 🙈
The being woken up as I was drifting off was really scary, others have said it’s possibly due to low oxygen levels, I’m not sure. It was as if I was just in a constant state of anxiety/excess energy but also knackered..! It has faded lots and seems to only show a up a bit during occassional relapses.
During the worst I was taking Valerian three times per day, this may help if you don’t want to take anxiety tablets? It will fade and gradually get less. Not sure why it happens..!

How is everyone’s hair?
Mine has always been dry, but it’s awful at the moment, very dry indeed and bad condition, it’s long so I’m just tempted to get a big chunk chopped off!

@fedupofbed thanks for the link. It confirms my suspicion of graded exercise being a bad idea. I think I’ll stick with intuition and the Covid Yoga Facebook group,

@Lightsabre sorry it’s turning in to a terrible year. It will get better

I think the reason I’m being fortunate with tests and care is because there’s a large teaching hospital in my city as well as a large regular hospital. There seems to be a lot of resources available.

I’ve just been for an echocardiogram and am currently wired up to a 24hr ecg. Apparently the echo was fine.

The technician said they’re seeing a lot of post Covid people all reporting the same symptoms, fatigue and relapses... but they are all improving or recovered... and the belief is that although it might take a while to recover, it is not long-long term.

@Whatnext2018 I'm glad it's faded lots. I think it has for me too - I just became acutely aware of it as it came back very strongly over the last few days. It's a bit better again today. My hair and nails are actually okay - probably because of all the extra supplements I've been taking since this started!

@MillStone I'm glad your echo was fine. When I'm in a positive mindset I reflect on how strong and amazing our bodies are coping with all this extra stress and pressure.

It's my 5 month anniversary today whoop 🎉 🥴.

Hello all... Hope you're having a good day.

I have just talked to my GP about having a fungus infection. He agreed. I've been prescribed mouthwash (to not clash with the esomeprazole), and have to take this for 7 to 10 days. If it doesn't work (which I don't think it will) then he'll prescribe meds for a systemic infection (which I think it is). This tallies with having taken PPIs for 6 weeks, so the plan is, if it doesn't work, I'll come off the PPI and take some anti-fungals. My gut is (excuse the pun) that that will work. For those on PPIs and are experiencing that weird "breathing through dust" sensation, I'll let you know...

@Lightsabre So sorry you’re going through such a tough time 💐

@MillStone That’s so reassuring what your technician said 🙏 my second ecg came back fine, just waiting on chest x ray results.

@fedupofbed That’s it, I think when we don’t experience it for a while, when it comes back it’s really noticeable. Compared to a couple of months ago, it’s pretty rare, we’re definitely improving even if it’s slowly 💜

Hello all,
After a too good to be true couple of days relapsed yesterday at 16weeks to the day since the whole thing started!
Although I felt yuck and disappointed symptoms not as severe.

Has anyone chanced a visit to hairdressers yet ?

Thinking of you all on your own journey.
Ps Glad some of you getting good support medically. Not the case for me sadly.
Did any of you get positive C19 tests? Some of the articles on long haulers saying because folk can't prove had virus they can't claim benefits.

My my, tomorrow brings week 20 for me...
Just catching up, I’ve done myself a mischief and have been in relapse. It has confirmed to me that I had been pacing very well...coughing and chest pain is right back as is swollen glands and sooooo tired

Hello, first post on this thread. I was first ill mid March, but no tests available. Just about recovered after a couple of weeks. Then ill mid April. Then recovered. Then ill again late May, recovered. Then again earlier this month, and had been feeling pretty ok the last couple of days, and just this afternoon have felt the familiar overwhelming tiredness, slightly cold, funny taste in my mouth....just checked and have a low grade temp again. So gutted! I have been careful to pace, spent a lot of time doing very little and leaving DH to sort the kids, cook and generally do lots round the house. And had started to feel positive.

Have so far had a negative antibody test (3.5 months after first illness), and a negative swab at the 4th incidence of illness (but found it really difficult to reach right to back of my throat so not sure if it was a good sample).

Blood tests generally fine. Have seen a cardio (after significant heart related symptoms at my third illness) and all ok. Awaiting a couple of other results, but GP losing the will to live with me (or that's how it feels).

I thought I had turned a corner. Does anyone else have the recurring low grade (or high-grade) temperatures? Does this mean I am infectious all over again?

Thanks for reading this far!!

@seriouslynonames hi and welcome, though so sorry you're going through this too. You're not alone. Fingers crossed this time your relapse will be shorter. I had a very high temperature for the first 2 weeks of illness then a low grade one for months and months. It finally faded away, only to return (again low grade) quite recently. This coincided with the time between ovulation and my period. It's gone again since my period started. I honestly don't know if we're infectious but my best guess would be not after all this time, especially if it's just low grade and a swab has come back negative.

@BeautifulPark sorry you're relapsing too, and again hope it is short lived.

And @LetsBeSensible sorry as well. At least as you say you now have a good idea of correct pacing.

@seriously no names @seriouslynonames
Sorry your both not well too.
I had low grade temp afternoon. Normal by evening.
I too worry about infection thing.
I agree that from March shouldn't be.
But not so sure. It worries me.
What do others think?
Hope you all have good night.

@BeautifulPark @seriouslynonames No I do think it's very unlikely that we are still infectious after a series of weeks. The GP told me as much, but all the while I was sitting in the 'hot' Covid consultation room and she was of course in full PPE. So while it's highly unlikely, it cannot be certain yet that we are not infectious.

I've had a stressful couple of days and barely slept last night, so am expecting a relapse. I'm around 21 weeks I think. Feeling fairly normal at times which is incredible but I am always wary of the relapse around the corner - although each cycle seems to be a little milder than the one before.

Don't know if my vitamin and mineral supplements are helpful but they've cost be a bomb so hopefully they're helping somewhat. Taking vitamin D, Vitamkn C, Zinc, B Complex, Magnesium.

Oh and CoQ10.

Not posted for a wee while, will be four months on Thursday since I caught this thing at the end of March.

Legacy symptoms seem to be cyclical, lasting 24 hours or so every week-ish: localised chest pain under my left breastbone, with a cough which is akin to trying to hack up the very last dry phlegm at the end of a bout of Bronchitis. Fatigue is also sometimes present.

Then it goes and I’m seemingly ok for another few days until it returns again.

Annoying. But hey, I’m still here!

Hello everyone.
Not sure How many of the oldies are still here? I am as very active in the first few threads back in March.
Have been really good actually for at least a couple of months but having a small panic today as felt my shortness of breath come back again along with what I believe are heart palpitations. I haven’t had those for weeks! I remember having it constantly towards end of my sick stage then it came on and off every few days for a while. Saw the cardio damage post...that didn’t help. Am intending on seeing a heart and lung specialist in September to just check I have no long lasting damage that I am unaware of.
Anyone else left with occasional heart palpitations?

Thanks for kind words all.
Am going to do another swab test in the morning - will try to tolerate the swab a bit longer this time!
@findingschools4myboys
I had cardiac symptoms/palpitations but that was minor during the first two 'episodes', got much worse with the third relapse, hence the referral to cardiologist. He said he found nothing of concern but I have continued to have palpitations /ectopic beats etc. I am getting used to that, it's the fatigue and low grade fever that is slowly eroding my confidence. And that docs don't seem to think it's covid - I just can't see what else it can be at this stage, with all tests so far 'normal'. Just so frustrating that docs see 'normal' results as the end of the road, whereas for me it's not - if nothing wrong why do I feel like this/have a temp??!!

Ah well, tomorrow is another day....!

@seriouslynonames have you found out about POTS (increases heart rate on standing)?
Palpitations also a feature of dysautomnia - which is to do with central nervous system dysfunction.
Both are showing up as possible explanations for some of the cardiac symptoms being experienced in longer term covid.
I'm sure you've tried this already but have you been drinking 2-3l of water a day? Some are finding that the palpitations reduce with an increase in fluid intake.
If you meet the threshold for POTS (using a bpm monitor and doing a lie down to standing test) you could increase your salt intake as well - this has made a huge difference for me. However of course you need to be wary of doing so if you have high blood pressure.
POTS info here www.potsuk.org

Dysautomnia is to do with the Autonomic not central nervous system... doh

@AndsLee This tallies with having taken PPIs for 6 weeks, so the plan is, if it doesn't work, I'll come off the PPI and take some anti-fungals.

When I came off the PPIs because the thrush had become far, far worse than the GERD, I looked up alternatives and found that there are studies that show ginger can be more effective in treating GERD than PPIs. So I switched to that and have had very little GERD since. Ginger is also an anti-inflammatory and has anti-fungal properties so it's good for the whole host of lingering issues most of us are still experiencing.

My thrush has flared up big time again. And on looking it up I can see that it's being associated with Covid in a number of articles online. Which makes sense to me as I definitely had recurring thrush symptoms before I started taking PPIs. It's not uncommon for thrush to be a problem after viral infections. I've given up on the natural treatments for it and am going to pick up a prescription for flucozanol in a few minutes. Hopefully that will knock it out of the park as I find it genuinely debilitating.