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Original poster

COVID long-termers 14 weeks+

982 replies

isitorisntit · 27/06/2020 08:41

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.

OP posts:
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8
Criticallythinking · 20/07/2020 07:21

Morning all. Has anyone else had joint specific pain that is burning and comes in waves? My symptoms have been mostly neurological in nature, well as well as the joyful respiratory ones. I’m now 4 months into these pains and whilst they aren’t as bad, they interrupt my sleep and I get into a cycle of exhaustion. Ive had intermittent pins and needles in a few toes on one foot and one side of my face since the worst of the illness. I’ve had lots of tests via a rheumatologist and my joints are fine. I’m going to push the GP for neurological tests but I am not hopeful. DH is a doctor and I work in a medical field and lots of medical friends see the symptoms as odd and unusual in nature.

My cough stopped a few weeks ago but that said I still cough up phlegm every few days and have the breathlessness and fast heart rate you all describe.

I’m seeing that people are referring to CFS/ME protocols but I’m finding it hard to line up my symptoms with that but not sure if I’m in denial and in fact activity is causing the flare ups of pain. I feel I’m going quite mad trying to work it all out.

I’m lucky enough to be off work sick however off to Center Parcs today and DS who is 6 is super excited and lively and I’m
sure I’m going to ruin it...period due next week too.

Just offloading really! I had felt I was improving but ain’t that the way with this!

AndsLee · 20/07/2020 07:23

@Whatnext2018 @Outofthevalley
I have an odd chest feeling too. It's not like a flutter though, more like a "dropping" feeling. I wouldn't say I am short of breath, it's more like when I take in a breath it isn't full. It feels around my stomach too. I've also had the "being pushed down" sensation.

I have beem referred for a 24 hour ECG, I do think my heart rate is a little low. I have my suspicions this is vagas nerve related though...

Lightsabre · 20/07/2020 08:28

Morning all. I have my lung CT scan tomorrow morning - am nervous but glad to be getting one. As I've been taking it easy, the back pains have eased off a bit. My worry is that, once I return to work/normal routine, it will all flare up again. I'm definitely able to walk slowly for longer periods now. I'm fatigued and everything seems like a huge effort but I manage to do things as long as I can rest at points in the day. Considering a phased return to work from September depending on the outcome of the scan.

MillStone · 20/07/2020 08:53

@Lightsabre good luck with the scan.

Have you had a lung CT before? I wasn’t warned that the machine would bark structures at me so I was a bit taken a back when it suddenly told me to breath, not breathe, big breath, hold breath... etc. It was quite hard to hear. Just mentioning it incase.

Criticallythinking · 20/07/2020 09:13

@Lightsabre good luck and really interested to hear how you get on. I had a clear x ray but still having lung symptoms. Let us know what it shows! Also understand re work, not knowing how to stop these flares is awful x

Lightsabre · 20/07/2020 09:22

Thanks for the heads up @MillStone and I will ask about the instructions when I turn up.

How did you get on with all of your follow on appointments?

Thanks also @Criticallythinking - I'll feedback on here.

Swirlingasong · 20/07/2020 09:55

Had anyone on here been diagnosed with POTS? My GP currently thinks this may be what is wrong with me.

Out of the valley I get that feeling sometimes, exactly like a butterfly on the left side, upper part of my chest.

Swirlingasong · 20/07/2020 09:59

I should say I don't actually know if I had covid. I had some awful virus at the end of last year and think I have been suffering post viral symptoms since then but the also had symptoms in March that could have been covid, but of course no test, so who knows what has caused my current symptoms.

TiddleTaddleTat · 20/07/2020 10:19

Thanks for posting @Moodgie
Interesting until I got to the bit 'after a period of exercise in our gym...' and I realised it would be the standard rehabilitation model, focusing on the idea of deconditioning.

Im concerned about this approach looking through comments on the long haul FB group and having read a bit from the CFS/ME experience and the great info at www.physiosforme.com/covid-19

Risks doing more harm than good when long covid is still so little understood. Fortunately my GP was great about this and discouraged exercise, said at my current state and having done a 40 paces oximetry test, that a slow walked lap around my garden was about right for my stage and not to increase activity too quickly.

TiddleTaddleTat · 20/07/2020 10:58

Came across this too in relation to exercise and post-covid, from a ME perspective. meassociation.org.uk/2020/07/clinicians-letter-to-nice-results-in-statement-on-graded-exercise-for-post-covid-syndrome/

alittleprivacy · 20/07/2020 11:25

@TiddleTaddleTat Interesting until I got to the bit 'after a period of exercise in our gym...' and I realised it would be the standard rehabilitation model, focusing on the idea of deconditioning. Im concerned about this approach looking through comments on the long haul FB group and having read a bit from the CFS/ME experience and the great info at www.physiosforme.com/covid-19

I think that whether exercise is helpful or not depends on what type of post-viral conditions the Covid has triggered. If someone is experiencing symptoms of CFS/ME then exercise should be avoided. Covid also seems to retrigger Glandular Fever in many patients who have previously dormant Epstein Barr virus in their system. And exercise is to be avoided in adults recovering from Epstein Barr.

On the other hand my postviral issues are/were costochondritis, pleurisy, globus pharyngeus, esophagitis/reflux and esophageal candida. (The latter being caused by medication.) I have always found a mixture of rest and targeted exercise very helpful. However I regularly made myself worse with the wrong kind of exercise. I've been basically trial and error-ing my way better, while continually causing myself to get worse. In hindsight I know I needed to have taken things an awful lot easier in the first week or more of recovery from the initial virus and I'd probably have avoided months of inflammatory illness. And once the inflammation started, an actual plan of targeted exercise and scheduled rest would have sped up my recovery and helped me avoid making things worse while I flailed around trying to work out what helped and what made things worse.

TiddleTaddleTat · 20/07/2020 11:51

Yes @alittleprivacy undoubtedly there will be different groups with different long term presentations, and for many a gradual return to exercise will be beneficial. It's just the lack of information out there at this stage in the news info I'm reading that refers to the detrimental effects of doing so where it looks like post viral syndrome / possible development into CFS/ME

Moodgie · 20/07/2020 13:09

I have been shattered again the last two days, I wonder if again I have been doing too much.
I do t do any exercise but have been walking the dog and doing 10000 steps. Is walking classed as exercise? Should I be avoiding that?

MillStone · 20/07/2020 16:19

Hi @Lightsabre thanks yeah I’ve had some new tests but I’m not really any closer to discovering anything.

I had breathing tests last week and have an appointment tomorrow with the respiratory consultant to learn the results and hopefully some insight.

I started physio a couple of weeks ago but after two appointments they are still performing various blood pressure, breathing and pulse tests and wanted to discuss my situation with some other parties. From what I can gather I ticked the boxes for various breathing issues but only on paper. When it came to the physical tests nothing rang true and my body is not performing as expected.

I suspect i will be labelled as post viral fatigue syndrome. I have been referred to CFS but haven’t heard from them yet.

My breathing has changed / improved a lot in the past week. It’s hard to explain but everything feels a lot more free and less panicked. It’s still not right but noticeably improved. As is my reflux.

My heart continues to pound A lot. I overdid it yesterday and paid the price all night and today. I have an echo and 24hr ecg next week.

Good luck again with your appointment. I was super nervous but it was actually fine Smile

TiddleTaddleTat · 20/07/2020 16:39

@Moodgie yes walking is exercise, in terms of CFS/ME all physical exertion needs to be considered - taking a shower, making a meal, etc. If you are noticing a symptom flare maybe it is that you are doing too much at this stage. I've found some good info on pacing at www.cfsselfhelp.org/pacing-tutorial/finding-your-limits

Fwiw I am at 1000-2000 steps a day just pottering around the house, with lots of rest in between. However I'm still mainly bed or sofa bound so not necessarily comparable to your situation.

Kitcat122 · 20/07/2020 17:28

@Moodgie some weeks back I felt much better and started walking my running route and after about 10 days had a nasty relapse. I have been working for 6 weeks now and feel OK so going to Start walking again but very gradually this time. Chest xray results were clear 😀

Moodgie · 20/07/2020 18:15

@Kitcat122 Yay for the clear! Smile

AndsLee · 20/07/2020 18:50

That's what thd throat sensation feels like!! Tonsilitis that won't heal... Glandular Fever! Whoever brought that up...YES!!! :)

Whatnext2018 · 20/07/2020 19:19

@AndsLee Yes I hate the strange pushing sensation, I feel it on my chest and around the back of my neck..really bizarre. I also have the dropping feeling but less than I used to.

Whatnext2018 · 20/07/2020 19:20

@Outofthevalley I had the butterfly feeling around my heart around a month ago for a while, so far it hasn’t come back. This is more like shaky within the chest 🤷‍♀️

Whatnext2018 · 20/07/2020 19:22

@MillStone I had the pounding heart and palpitations quite a while ago for a while, it was put down to high anxiety at the time. I generally only get it now after rushing around too much.

Whatapickle78 · 20/07/2020 19:38

@alittleprivacy
Really interesting what you say about glandular fever. My blood tests showed I’d had it in the past (unbeknownst to me but I’ve had a lot of what I thought was tonsillitis in the past). A lot of my post Covid symptoms seemed like glandular fever... where did you read about the re-triggering?

Kitcat122 · 20/07/2020 20:15

@Moodgie thank you was a relief.

AndsLee · 20/07/2020 20:34

@Whatapickle78 @alittleprivacy
What I am about to say is a little weird, but all things considered I think you'll get it...
I'll take Glandular Fever anyday, at least that's a "normal" illness...

I tell you, this Covid-19 malarky...this isn't a natural virus.

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