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.

Anyone with fatigue out of the blue? Have been doing all right energy wise and today I’m shattered like I haven’t slept!

@Lightsabre I would be interested to hear how you get on as sob and chest pain are my ongoing symptoms.

Has anyone got a lot of nasal congestion since being sick? In the last month whenever I feel like my breathing isn't very satisfactory, I check my nose and it's pretty much always congestion. I don't have a runny nose and I'm not feeling that uncomfortable nasally heavy feeling I'd get with sinus problems, but I pretty much always have one nostril (the right 90% of the time) that's too stuffed up to breathe in properly. If I don't take a decongestant, it can mean that I either can't breathe properly with my nose or I can pull in air so hard that it hurts my right lung in the same place that it hurt when it was pleuritic. That and swollen glands around my throat are my main symptoms now. I get some dull costochondritis ache at time too.

But I consider that very, very good going as I managed 3 sessions of rink skating last week. I'm notably weaker in the legs and core from months of spending vast amounts of time resting. But my chest is weak from more than just muscle wastage. The costochondritis is definitely still limiting what I can do with my arms. Lifting my arms out from my body and holding them is crazy hard and results in pain through my sternum after just a few minutes of it.

Hi all- remind me who here isScottish? @AndsLee ?

@Moodgie I've got sudden tiredness today

@godhelpusall I feel really shattered, like poorly shattered, with a foggy head.

alittleprivacy I used to get a feeling like I was congested - not like a cold but completely dry - which meant I could not breathe properly and had to breathe in through my mouth. I have not had that for a few weeks though (touch wood!).

I just have chest pain which does not seem tied to anything. I also get dizzy and short of breath after telephone calls. As for fatigue, I fell asleep Saturday and Sunday afternoon which I had not done for a couple of weeks. Just a crushing tiredness that I could no longer function. For reasons I will not go into, I wonder if it is also emotional exertion as well as physical - although Sunday I did go to the supermarket for the first time in almost seventeen weeks, so I don’t think that helped. I have felt more energetic today but the chest pain is worse. It makes no sense.

@alittleprivacy Yes to the stuffed nose, makes it hard to breathe but I also sneeze lots, it’s like a bad hay fever that comes and goes.
Also very tired this weekend and dp was too, it’s very hot where we are, so could be part of it, but both of us kept just wanting to lie down, which isn’t really possible with a toddler.
Today I’m full of the sneeze thing, less dizzy than yesterday, chest still a bit tight and tinnitus is back on and off, not as achey as yesterday though..yet.
I’ve booked another ecg (last one was 9 weeks ago and a chest x-ray for next week, just for some reassure hopefully.
Can’t do links on this phone easily, but this short interview is spot on with regards to the clumsiness and foggy feeling for me.

Have you been referred on @KatySun to ENT or respiratory? If not, push for this.

Also have feelings of nausea just wash over me, does anyone else?
I find it so weird how it all comes on so strongly and you can feel so dreadful, then it can lift and you feel almost back to normal.

Actually, as I’m sat here I can feel a range of things that just come, then go again. The odd pain in arms, down legs and left foot. Sinus pain and stinging eyes, pain felt in top gums..stiffness in neck..it’s pretty endless, isn’t it 🤷‍♀️I can’t actually imagine how it will all just ‘Go’
I estimate I’m around 15.5-16 weeks at this point.

Hi Lightsabre thank you, no I have not, I have had a chest x- ray which I had to push for even. I have not got the results yet. I have not even mentioned the dizziness and short of breath with talking because it is only in the last week that I have started doing work calls. I did a Zoom meeting about a month ago which led to excruciating chest pain more than anything else, which is why I pushed for the x- ray. That was nearly two weeks ago now.

Today at 10 I had a work call which lasted about forty minutes and I was doing most of the talking - I was still out of breath at lunch time. Actually that probably answers my point about why the chest pain is worse today.

Have you got a referral?

I heard on the news today about people taking a long time to recover and then I see this thread.

Am I okay to join in?

Relieved to find this thread. 16 weeks in, still getting polaxed by exhaustion. Today breathless, headache, Nausea , eye pain, shattered and bloody tearful. Have given up and gone to bed. Wiped out and slept all afternoon. But weepy from disappointment and frustration.

Trying to be proactive though - has any one seen a (very) gentle excercise regime that will help me get stronger and fitter? Have been trying this week to walk for half an hour at a good pace and get my heart going, but today only managed 15 minutes and now totally exhausted (is it related?). I am getting larger and larger and worried about my fitness levels, but any level of exertion seems to cause a level of relapse. Should I even be bothering?

Sorry to moan, thanks for reading.

Hi @SunshineCake welcome

Hi @Beforetoday

Whoops posted too soon sorry! Welcome @Beforetoday this is helpful if you haven’t seen it : m.youtube.com/watch?v=bbdlMWXiHoc

@Beforetoday and @SunshineCake , welcome and sorry to hear you're long termers too.

@Beforetoday, I think the advice is not to push yourself as this could lead to long term Chronic Fatigue Syndrome or ME. I think it was yesterday that someone posted a link to Physios for me (I think they were called) with further advice on post viral fatigue. I rest after most tasks and when I feel a bit more energetic, I'll go for a walk and do a gentle stretch. My pace of life has slowed down considerably. I'm still off sick from work so luckily have some time to convalesce.

I would also advise you both to start pushing for blood tests etc. A lot of us have had clear X-Rays and clear blood results but can then ask for referrals for specific things ie; to respiratory or Ear, Nose and Throat departments.

Aah thank you for video, very helpful and reassuring, @millstone I do like Dr Hammond and a clanger.

@Lightsabre it's so hard to believe that 15 minutes of brisk walking is pushing myself! I can't get my head round it. Have been doing slow walks with the dog, but putting on so much weight.

Work is quite full on, but I don't know how to take sick leave in these circs. Doing things so slowly and badly and then disappearing? I don't know.

Hi Beforetoday

What about couch to 5K? I'm fifteen weeks in since I got confined to bed for two weeks and about ten weeks ago I started running as not being able to breathe terrified me. I have asthma and running has really helped me. I still have stuff that isn't great but while I am running I feel normal.

I think this is week 16 or 17. I’m just getting to an end of a mild relapse (headache, earache, neck glands, exhaustion, palpitations), which started three weeks after the last one. I’m starting to suspect it’s linked to period cycle. The anxiety and insomnia in the run up has been particularly shit this time. I also had a visual migraine with that, apparently they are linked to inflammation. On the plus side, through most of this relapse, I can get to the local shops or go for a walk without having to lie down after. Baby steps. to everyone.

@Beforetoday, it's a nightmare isn't it as the majority of us are so busy in 'normal' life and there sadly seems to be a lot of people who are very fit here too. It's such an indiscriminate virus and it's so difficult to make sense of it all.

@lightsabre it's the inconsistency that drives me mad - no straightforward improvement. Seem to get better, start behaving normally And getting on and then bam, back in bed with blurred vision and wiped out. I think period cycle and anxiety def make it worse too. Upset or stress is as hard as excercise.

@SunshineCake Would love to do Couch to 5k - downloaded it, tried first session a few weeks ago and it was simply too much. Pathetic isn't it.

For those on Facebook there's a lovely group called Yoga and PT for gentle Covid recovery. It was set up by a yoga teacher who's had long haul symptoms. There are graded sessions on there beginning extremely gently.

Welcome @SunshineCake and @Beforetoday and I’m sorry you’re both experiencing the horribleness!

What is nice about this thread is that people do pop back to tell us any improvements, and that really helps give me hope.

@Sunshinecake
Please go easy on the running! I started again about 4 weeks after my illness, and yes it also made me feel amazing initially, then very gradually, I started to feel worse and worse. Not connecting it to the running, I carried on thinking it would help (DOH) until I crashed with a relapse of all symptoms.

You are much more well informed than I was (and probably more sensible!) but do please take it super super slow.

The most I’ve done since relapsing is a 20min very slow local walk. I’m trying to maintain this but with childcare this is already knackering enough.

I almost felt too ridiculous to post this, but woke up with an excruciatingly painful toe this morning! Felt like someone had taken a hammer to it. Realised this is what my finger joints felt like every morning a few weeks back... these symptoms are SO bloody random.

Has anyone managed to see an ENT specialist about throat and glands?

My thyroid test was normal, but the front and top of my throat just below my chin is still visibly swollen and still very sore. I’d love to know what it is?!