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.

Hi everyone, haven’t been on in a while but still here and still suffering with fatigue,bad muscle pain, SOB on exertion, and inexplicably overnight, coughing again which is keeping me awake.

It’s 4 months today for me since I first got ill on 10th March. I never dreamt I’d still be here when posting on the lungs threads all that time ago. The 4 month milestone feels a bit weird as I always thought it’d be fine by now.

to everyone on here, lots of familiar names. I’ve been reading throughout. So sorry to all of you still going through this.

Hi whatnext anaemia was picked up by my blood tests.

musicposy I am sorry to hear you are still unwell.

isitorisitnot I am still waiting for chest x -ray results after two weeks. I am not sure what to ask either if it is clear as I definitely still have chest pain. I guess I am worried I will just be left to get on with it.

@musicposy sorry your suffering still. I noticed you mentioned “SOB on exertion and inexplicably over night”

Terrible overnight SOB started again for me about 2 weeks ago. I nod off fine but awake at about 2am and feel totally unable to breathe. I try but it feels unproductive and I can’t catch breaths. I find myself taking big deep inhalations which leads to over breathing and painful chest and back muscles. My oxygen levels are always 99-100%.

Are your nighttime experiences similar?

This seems to have started since I’ve become less fatigued and more active during the day. By active I mean little movement often such as pottering in the house, light 5 min yoga and gentle 100 meter walks. That’s with lots of resting too, so not really overdoing it.

I tried to explain this to a physio yesterday but I think they were wondering if it’s anxiety. To me it feels like the signalling between my brain and breathing is not working.

Thanks, hope everyone is feeling okay.

17 long weeks.

Still cramping in chest.
Tinnitus 24/7
Breathless
Headaches
Joint Pain
Wheezing
GORD
Fatigue

I never imagined this in a million years.

Just had my results in. Negative for covid. GP helpfully reeled off a list of other nasty viruses that it could have been. I pointed out the high false negatives the test can give.
I did have high Igm which fits with having had a viral infection. Also high liver which can be after an infection so need to have a scan at some point, need the bloods done again just for liver.
I’m going to guess I have non-alcoholic fatty liver, a friend had it recently and we are both fat and unhealthy...

@Ernieshere @musicposy @isitorisntit I'm so sorry you're still here too with this bewildering array of symptoms. Sending love and strength 💐.

@MillStone I'm sorry your nights are so hideous. I'm still struggling with SOB too though mine seems to present mostly in the evening. What you say about brain and breathing rings true for me. In fact I had a bit of an epiphany about this yesterday when I stumbled upon this page from Dr Myhill's website:

https://www.drmyhill.co.uk/wiki/Hyperventilation--makesyouufeelassifyouucan%27tgettyourbreath

Many of my symptoms (especially facial numbness, vivid dreams) completely match this. Also my chest X-ray all those months ago showed hyperinflated lungs (dismissed as anxiety as they didn't show any typical covid presentation 🙄).

I think this breathlessness/hyperventilation is completely related to my autonomic system malfunctioning (like my other symptoms relating to my heart rate, 'wired but tired' sensations, etc). Trouble is I still don't know how to resolve any of this!

Hey @fedupofbed thanks, I’m sorry you’re dealing with this too. Thanks also for the link.

With no obvious physical problems I too wonder if the neurological route is the next step if this doesn’t right itself. Wired but tired is so true.

By the way I laughed when I saw your photo and comments about your supplements. It mirrors my own stash of recent purchases. Thankfully my amazon prime runs out in a few days.

By the way I noticed Magnesium in your stash. Since I started taking it several weeks ago my dreams have been crazy and vivid. I believe this is commonly noted by others.

Sorry to see some of us still quite unwell after so long.
I was feeling quite a bit better but since period came yesterday I had an awful night. Heart rate was 45, I’m aware it will be lower when lying down but that low? As I was trying to sleep I kept being woken up and then woke up this morning early with that anxious racy feeling I haven’t had for a while.
Back with the diarrhea, stingy eyes and sneezing, it feels as though I’ve just caught something, not recovering or in a post viral stage. Did you all have symptoms return just during your period, then they went?
Feeling pretty low with all this today, as I’m sure we all are. Want to go back to waking up feeling normal and not going to sleep with an oximeter under my pillow. I feel like I’m doing everything I’m ‘Supposed’ to-all the supplements, rest, walks, sun, non inflammatory foods..I’m not sure it’s making any difference in all honesty.
Sorry for the negativity 😢

@Whatnext2018 sorry to hear that you are having a dip. I too have seen symptoms return with my period, although this month has been the least affected so far.

I understand your frustration with the supplements , diet etc. I'm sure these things are helping but it feels like for us long haulers the only solution is the hardest one, which is time. I know it doesn't seem much help right now, I'm sorry. I hope you are able to take some time to do things you enjoy today and over the weekend.

I'm feeling a bit less fatigued today, which is incredibly rare and I'm putting it down to a couple of days off work. I do have work to do this afternoon so will be sure to rest afterwards. It really is a case of being incredibly gentle and patient, it seems.

I'm so sorry @Whatnext2018 it does seem periods cause huge dips, and very much hope you will improve again soon.

I've just had my second acupuncture session - still not sure. She's also enlisted me on this project that provides a free consultation and Chinese Herbal Medicine to front line/ key workers. All the practitioners involved are very experienced with an interest in Covid. I'll be getting my medicine next week. Not everyone's cup of tea but there are a few school workers on here so thought I'd share the link.

jadescreen.co.uk/

@MillStone thanks for the info about magnesium and dreams - I didn't realise that.

@Ernieshere. It is utterly soul destroying isn't it to have such an array of symptoms 17 weeks later! I will be 17 weeks on Sunday so not far behind you and the tinnitus is I think the thing that is getting me down the most! It disappeared in late May and most of June but has returned in the last couple of weeks. I had the most awful night with it a couple of nights ago - it screamed all night, I got no sleep and woke up with awful ear pain in one ear. I just sat and cried.... it's bloody relentless. Coupled with the sludgy cognition, it's making working very difficult. My employers have been understanding but for how much longer..?

To you all. 💐💐

@Whatnext2018

Also (trying to find positives here) is it true that it’s unlikejy we’d be infected again if already had it and recovered? I think I remember that nice medical guy on Youtubr, John? saying it’s unlikely?

Do you mean Gez Medinger? If so, he's not a medical person - but does get all his videos fact checker by a doctor first.

@fedupofbed sorry your second session still proved unfruitful. I think you have to give these things time possibly. Thanks for the Chinese Medicine link - sounds interesting. Will take a look.

@Norugratsatall No it’s Dr John Campbell, he’s easy to follow and seems pretty sensible.

@TiddleTaddleTat
@fedupofbed

Thanks so much 💐 it is so hard but we have to hang in there, never known anything like it really, just the reoccurrence and relentlessness isn’t it.

@Norugratsatall, your tinnitus sounds awful 💐. Is there anything that relieves it?

I have never had a temperature, not even when I felt really hot.

I couldn't get out of bed for two weeks. Walking to the loo would tire me out for another hour or three. I ate because dh made me. I was coughing, bad chest and back pain, headaches, sore throat and serious difficulty in breathing. Wasn't offered a test. Told I probably had it. This week sent for a test but of course it was negative as I don't have it any more but still have issues.

I'm shattered every afternoon. My throat hurts more today than yesterday and I still have the odd cough and headache with chest and back pain most days.

My brain doesn't work properly but I had already had that as I'm peri/menopausal and I missed three periods.

@Lightsabre thank you. It's very distressing. Copious amounts of ibuprofen used to relieve it (as I think it's all due to inflammation in the inner/middle ear as I've often had ear pain and a blocked ear feeling too) but less so recently and I'm reluctant to take too much.

Hello again everyone.
I am improving very slowly. I can regularly do 1500 steps a day now.
The crippling attacks of fear have been gone for a while.
I’ve still got tinnitus and dizziness but they are diminished. The buzzing has gone. It still hurts under my arms and I think my chest area is still all swollen inside. That comes and goes in intensity.
I’m not sure if I’m really improving or I’m better at managing this now. It’s probably a combination of both. Life has definitely got easier since I went on beta blockers.
I sit up more in the day than lie down.
Today is a milestone, I drove to a shop to buy a magazine. And I wore heels.
I’ve also dyed my hair and fake tanned.
I have an echocardiogram in a couple of weeks too. I will be well enough I think, to drive myself there.
It’s a slow slow climb, but I’m fairly sure I will get back to being me now. For a while I didn’t think so at all.
At some point I will have a shower and wear a bra again.

@Crayfishforyou that sounds positive. On my good days I feel as though it’s a slow climb too. I think we will get there, but my goodness it takes time!

@SunshineCake also shattered later in the day and my throat flares now and then. It’s terrible today, so much I’ve convinced myself I’ve been reinfected. I’ve convinced myself of this before, though.

I agree with periods causing dips though every time I have a dip due to a period I think I’m really ill again! But it definitely affects me negatively. Mine are regulated by HRT so I always feel as though they aren’t “real” and shouldn’t cause me problems. But they definitely do.

@fedupofbed the link is interesting. I saw my nutritionist yesterday in despair and she has given me a mixture of herbs so I will see. Certainly not better so far but I’m giving it time. I’m interested to see how the acupuncture develops for you.

@musicposy It does feel like a big dip doesn’t it? Mine aren’t even really like proper periods during this, still cramps but very light bleeding and seem to be over quickly, which is a good thing I guess!

@Crayfishforyou That’s sounds really promising, it will improve for all of us but it’s true it seems to be very gradual and can seem lots better then back to before, but not as bad, really quite odd.

Yes absolutely, I feel it's like waves that become weaker over time. Sometimes the period between feeling well and a relapse is weeks; other times it's hours.
I felt remarkably well yesterday evening and this morning. This afternoon I've been hit by a wall of fatigue, leg pain, and earache.
Still I'm taking it as a victory - almost 24 hours feeling more well than I have done in over 4 months!

Just seen this - really excellent:

blogs.bmj.com/bmj/2020/07/10/patients-experiences-of-longcovid-are-missing-from-the-nhs-narrative/

@Crayfishforyou that's a bit spooky as I was just thinking of past posters and wondered how you were getting on. Heels, hair and tan... go girl! I'm glad you're improving and feeling mentally stronger, even though it's slow.

@musicposy let us know how you get on with the herbs. I just have odd feelings about the acupuncture - it almost has too much of a powerful effect on my body, probably because everything's so out of kilter for me. I've barely been able to lift my head off the pillow this afternoon which I guess is to be expected... but let's see how the next few days go.

@TiddleTaddleTat that's so bitter sweet... feeling much better then relapsing. But hope it's the beginning of more better spells for you. X