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.

@AndsLee My heart rate can go very low at times also, in the 40’s
I have noticed when I know stand up, my heart rate only goes up by around 14, when before it was 30 🙈I’ve read the normal is to go up by 10.
Also still sometimes dizzy and foggy headed.

Back from GP, she was great. Listened to chest, took BP, and did a 40 step test with a pulse oximeter. HR went up to 135 and felt breathless but stats were good so she said this is simply my heart is working harder but is efficient ?
Been referred for an ECG and more blood tests.
GP was very honest and said that they were still puzzled why previously healthy people still experiencing this, but that rest and time were likely the best treatment. Relieved to hear she said exercise should be no more than pacing around the house or garden slowly.

I’m now at week 17 and have a tight chest, tickly throat, and exhaustion. For some reason I feel awful in the mornings but better as the day progresses. I sleep in til past 9am most mornings, and then relax all morning. Most afternoons I manage to do a bit of housework or pop out in the car to the local shop or to see a friend. I also have whole days when I just rest at home.

My problem is that I’m going back to work next week as my furlough has ended. I’ve asked to work only part time instead full time, so I’ll be just working mornings, going into work starting at 9am every morning. I’ve no idea how I’m going to be able to do this! But due to possible future redundancies in my firm I don’t want to turn this opportunity down.

How has everyone else managed working?

@Frankiemintz That sounds really tough. I wonder if you could request afternoons instead of mornings as you need your rest in the mornings? What type of work do you do and will it be physically / mentally exhausting?

@Frankiemintz oh and in terms of how I've managed working, it's been a struggle. Have needed to be signed off then on phased return and I think duties will need to be significantly reduced for some time yet... that's what I need... whether they can provide it is another matter

@fedupofbed , @Norugratsatall. *@Lightsaber

Thank you so much. We have plenty of vitamin D but I don't always remember to take them. I am okay reading the news etc the last couple of times it has been personal stuff that upset me and even walking the dog didn't cheer me. DH was very kind and attentive which was nice and he was much better than usual. Today I feel okay but it was horrible yesterday.

Symptoms wise my throat is a bit sore, I was a coughing a bit when I ran, my hip really hurts and my chest feels weird.

I stopped for a paper today which I have only done about twice since March and the lady asked me how I was finding staying in. I am fine. It doesn't bother me at all. I have missed my therapy appointment but that starts again next week. I feel fine being in and it isn't worth the stress of going shopping but 16 weeks in I am wondering whether it will ever be over and I'll feel normal again. I don't see the need to see the doctor but there is a bit of worry about what damage might have been done.

TiddleTaddleTat - I don’t feel like I can ask to swap to afternoons at this stage as I’m just so grateful to have a job to go back to. They are busier in the morning so that’s when they need me. It’s not a physical job, it’s office based, but can be mentally taxing at times, which I know will tire me out. I might see if I can negotiate for 4 longer mornings instead of 5, and then I can have a rest day in the middle.

@Frankiemintz yes a rest day might be a good idea, although depends how much extra you'll be taking on during those longer mornings. It will be good to have the afternoons to rest, I suppose it's the gradual pacing rather than boom and bust cycle that is likely to be helpful (as in CFS). This is what I'm seeing in myself. My work is from home and computer based but mentally taxing and quite stressful, and I have found I need a good rest at least every hour I'm doing. I quite often try and power through and then I have negative effects. It's just really very hard.

I found work very hard at first but feel OK doing full weeks now. I just still have this blasted chest and back pain and sob with any kind of very minimal exertion. The back and shoulder pain almost feels muscular but the front of my chest is a weird internal bruised type of feeling. I've been ill since mid March so stopped counting weeks and days. Had a chest xray last week but still waiting results.

Hi @fedupofbed I think the herbs are helping a little but it’s so hard to tell as I still feel different every day, despite overall (very slow) progress. My practitioner advised to take the herbs with or just after breakfast or lunch, so definitely not on an empty stomach, especially when you first start trying them. Hope you get on ok with them x

This virus is the gift that keeps giving, 18 weeks in and I have a new rash appearing big angry welts :(

Respiratory appt went well today. The doctor has had it himself and still wasn't back to normal. So glad to talk to a medical professional who understands. He said he was 99% positive I'd had it despite the negative antibody result. Interestingly he said that around 70% of his respiratory team had tested positive over the past few months but very few of them had raised enough antibodies to get a positive venal antibody result! He was quite dismissive of them. I was sent for another D-dimer and a couple of other blood tests (will check which ones) and he's ordered a CT scan. He'll see me again in 3 weeks. He is seeing a lot of Covid patients and many are recovering, albeit slowly.

Depending on the results, I'll start battling it out again with the GP for a referral to ENT.

@Lightsabre great to hear your appointment was a success and you’ve been referred for a CT.

ENT sounds like a good idea. A few days ago I was explaining the throat / stomach / oesophagus issues to a lung physiotherapist and they said an endoscopy is needed.

How are your energy levels and SOB lately? Is your breathing still improving?

That’s great news about the appointment Lightsabre

I am still waiting for results of chest x- ray three weeks on... I feel a bit let down by the whole thing, to be honest, and have given up on medical support. I am going to call to make a doctor for DD though as I am fairly sure she has got Costochondritis . My chest pain is more like a pulling, muscular pain across the front which can radiate across my back and shoulders - doctor said chest wall a month or so ago but not idea of and when it will resolve. I cannot run because then it gets stabby around the heart area (but doctor dismisses cardiac concerns).

Thanks @KatySun and @MillStone. Katysun, phone up the hospital for the results maybe? Sometimes they get mislaid between hospital and surgery. The general lack of medical care some of us have experienced has been shocking. I think it's only now that more people are experiencing it, including some of the Doctors themselves, that we're getting noticed.

My breathlessness is easing off unless I walk uphill and I can walk for longer stretches. I still can't walk and talk comfortably. I'm still walking slowly - it's as if I'm walking through treacle. I think this is fatigue so I'm trying not to overdo it. I went a bit mad yesterday afternoon and went uniform shopping after my appt then did a load of shredding at home and then my back really hurt last night so had a hot bath. I'm having my hair cut today thank goodness but will have a rest day in the garden.

https://drmyhill.co.uk/wiki/CFSAbilityyScale--aroughhmeasureoffhowdisableddyouare

This is the fatigue scale - it's useful for showing progress and is used monthly I think. Hope it posts ok. I was at 20 for a long time but have quickly jumped recently to 50-60 where I seem to have plateaued. Whereabouts are all of you?

Yes I will need to phone up. I guess somehow it is easier just to plod along and hope it will get better.

I think I have plateaued at between 50 and 60 on that scale, which is better than some people. It depends on the day, some days are 50 and some days are 60.

@Lightsabre thanks for the scale.

Same here, I seemed to jump from 20 to 60 in just a day or two where I’ve been for 3 weeks or so.

There has been a slight improvement since in terms of symptoms but not really energy. It’s hard to gauge because I’m terrified to test myself and relapse.

Another jump would be nice but for the time being I’m content treading water instead of testing myself.

I’ve lost a lot of muscle in the past 16 weeks so I’m trying to rebuild it with yoga and gentle weights.

@Lightsabre glad your appointment went well and thanks for the scale. I'm still at 20 but have felt mentally stronger and more positive for the last few days. My sleep is very gradually edging up too - I got 7 hours last night, which is the most I've had for months and months. It's giving me hope that you and @MillStone jumped to 50-60!

My session with the acupuncturist went well today too. She did some cupping, a first for me.

Hi @fedupofbed good to hear your sleep and acupuncture appointments are getting better.

Good to hear that @fedupofbed. I had a cupping session years ago and found it very relaxing. Re; the scale - it doesn't seem to be a linear progress for me - I have good and bad days but when I look back, the trajectory is upwards so that's positive. I think the big step for you will be when you can spend most of the day out of bed. For me that stage took at least a month or so of gradually cutting down the time in bed with an increase in strength and energy. I'm still spending quite a lot of time sitting on a comfy sun lounger in the garden when the weather permits.

Hello all.
week 16 for me.
Like so many of you, just as you think you may be getting better.....
sending love to all fellow long-term folk.

drhyman.com/blog/2010/07/30/how-to-stop-attacking-yourself-9-steps-to-heal-autoimmune-disease/

This was an interesting article and says similar things to Dr Sarah Myhill.

I would say I'm at 60.

In answer to age question I'm 64.
Has any one else in this group lost weight or poor appetite?