Covid lungs long term. 18+ weeks support thread

[LetsBeSensible]

For anyone struggling with getting over covid, relapses and the like.

Started with the “covid lungs...” threads in March 2020, before “long haul covid” was recognized. New joiners welcome.

Got it now! For anyone who hasn’t seen it: www.c19recoveryawareness.com/

I still reckon this illness ebbs and flows in 8 week cycles, as well as being affected by Aunt Flo. So this would be around week 24. It's been my "on" week. Main symptom again is the burning skin. No rash though. It seems to flare every 8 weeks, always during a period, but each flare gets either less in intensity or longevity. I'm applying hemp gel to the burny areas, I think I prefer the Aloe Vera gel though. Gonna try CBD oil before trying meds.

My breathing is better. It creeps up every so often, and is less intense. Seems to be worse when I exercise (fits with my diagnosis).

Stay strong everyone!

Hi everyone - just popping in to ask if anyone has been experiencing vertigo as a long-haul symptom.

I’ve never suffered with it before but had sudden onset of symptoms during the night last week which are gradually clearing. It might well be entirely unrelated (we were camping and it came on suddenly when I turned over in bed so could simply be triggered by my sleeping position).

Someone mentioned having unusual hypnic jerks earlier so wondered if there was anything neurological going on.

Morning all.
Nothing much to report except I am going to try a naturopath. Oh and I have been feeling more heart symptoms since I stopped taking CQ10 so am going back on that to see if it makes a difference.

Good morning!

@Meercatmama thank you for your updates, I always love reading them. I'm glad you and DH are still improving and hope this continues.

@AndsLee I'm glad your flares are getting less intense too.

@Moodgie how are you, any better?

@TiddleTaddleTat oo let us know how it goes with the naturopath, that sounds interesting.

My fatigue is still very extreme, probably not helped by DH no longer working from home, school routine starting (which for me mainly involves nagging, treating new shoe blisters and doing ponytails!) and a couple too many appointments this week. My good news is that I've not had any episodes of breathlessness for 3 weeks. I'm always scared typing these things though...

@fedupofbed Much better, thank you! Touch wood! Permanent cold now (mainly nose issue and a bit of a scratchy throat) but my friends have had it so I’m thinking it is a cold.
Other than that back to work (school) this week and I am not enjoying it but can cope I hope. Next week will be first full week so we will see. I haven’t been on here recently as busy but hope everyone is getting better!

Hello all, it's nice to see all your various updates and know that I'm not alone. I have not had a good week and slept badly last night, feeling it today.
I am still trying to find ways to reduce the teeth grinding/clenching so I can get more restful sleep.

I have read that lots of people - some of you guys too - are taking various vitamins etc. I am only taking vit c with zinc, and vit d.

I am not sure whether to take any B bits/B12 - my blood tests say I'm in the normal range (516 Ng/L) so don't want to mess with it if I don't need to. Those of you taking B vits, is it because you know your levels are low or because it doesn't hurt to top up even if they are normal?

Grateful for any thoughts, as always!

@Bubbinsmakesthree no vertigo for me (yet!), Hope it passes soon

@fedupofbed sorry your fatigue is on going - it's my worst symptom - and I can't work out to what degree the other problems are actually resulting from fatigue or separate symptoms themselves

@AndsLee my periods definitely cause me flare ups (or new random symptoms!)

Wishing everyone a restful weekend, and let me know your thoughts on B vits! X

@seriouslynonames hi sorry you're struggling with the fatigue and sleep too. I find it relentless, but have to tell myself to be patient and think how far I've come in the last 6 weeks.

My B vitamin levels were fine too but the iron supplement I take has added B vitamins anyway.

www.vitabiotics.com/products/feroglobin-fizz

I don't think it can do any harm and at least I know they're not going to drop at any time.

@Moodgie glad you're doing well - it's always lovely when people are too busy living their lives to be on the thread regularly!

Hi everyone, thought I would update. I am much better. I would say 95% back. Sob is pretty much gone and I only have chest twinges now with the pain. I am exercising gently and am back to work (school) last week. I too have a slight cold with slight sore throat but it is going around. Hope everyone has a good weekend. I am six months since first symptoms.

Whoop that's great @Kitcat122 !

Hi all,

Checking back in after being active in the earlier threads in March/April/May and sorry to see familiar names of people still having a tough time . I’ve had a couple of months of feeling pretty good and able to be active often doing 10000 steps a day or more. Have been hoping that’s me out the other side (had the classic saw tooth relapsing recovery) but now in the past week my heart rate has crept up, palpitations returned and chest feels tight. There has been a cold going around family so I’m thinking it might just be that that has gone straight to my chest. It’s nothing like as bad as the start but a bit disheartening to feel a return of similar symptoms to the latter part of recovery after thinking I was better. To top it off DD now has a fever after her cold symptoms passed so she’s now booked for test sigh

I hope everyone else is feeling ok.

@AndsLee
How are you today?
Really sorry you were so low.
I can empathise, Burning pain all over body is my main symptom.
xx

@BeautifulPark Thank you. I'm not feeling low, more a check in with my remaining symptoms. My period is stopping, so the burning has lessened today. You doing ok?

Yes, hang in there those of you still struggling. I really wondered if I would ever recover. Had many, many dispondant moments. But there is light at the end of the tunnel!! I had so many of the symptoms you guys have and I am testimony that eventually you will get better.

@Andslee
I think the relapses do go in 8 weeks cycle. Looking back at my post I can see the same pattern and they do lessen each time.

We did wallpapering today and my husband is just coming to the end of a eight week cycle and is complaining of tiredness, aches all over his body but especially his toes and SOB and he is making mistakes in his words and searching for words. What would have taken us two hours max today took over four hours as we had to break and then recommence. However we are pleased that we were able to do this and had the luxury of our son and girlfriend cooking our dinner tonight in our home.

It is odd because during my return to work I have found speaking for a long time gives me a sore throat and a headache by the end of the day. Husband said today by the end of wallpapering I am short of breath and have a headache. The symptoms seem to come back with over exertion and then wane off once rested. However we are better and moving forward
@fedupofbed So glad to here some small improvements at last and I hope they continue
@Kitcat122 Glad you seem to on the same path as me and have returned to work
Sorry I have not mentioned everyone but I am just dipping in and out. Please take care and I hope the improvements however small continue. As a online community we have are and have weathered a massive unexpected storm due to our desire to help and be kind to all. It has been much appreciated by myself and hopefully others. Lets keep it up to help other in the same situation as I know without you all I would not have been in the same positive mental position that I am in now
Thank you

Hi all,

So glad to see so many are improving.

I’m day 3 of my period and having a new, strange symptom I’m feeling a bit (lot) anxious about.
In my left calf (to the side and over the front shin part) it feels almost like moving inside and sometimes something moving over the outside of it? It’s really hard to describe, but feels very strange, has anyone had or know what it is? My right leg also still has odd pains in it. I’ve had odd aches in my legs on and off since May, but this feeling in my left calf is strange. Should I do another D diner test for clots? So anxious about this.

*Dimer

Morning everyone, brilliant to read so much recovery! Congratulations to those feeling almost back to normal. To those of us who are still on the journey, we'll get there

@Whatnext2018 I understand your worry about the new leg symptom . You do always have the option to call 111 or go to A and E if you fear a clot. Is there any swelling or bruising in the area, does it feel hot?
I had a similar symptom a few weeks back, it was an odd numb fizzing pain that crept up my leg towards my thigh and groin. I was petrified. However because it moved around and I also got similar pains in the other leg, I didn't ask the GP about it or seek help. One thing I did do was start taking magnesium and this did coincide with it stopping. In the end for me I think it was muscular.

@seriouslynonames Yes I saw an improvement in fatigue after taking B complex, after only several days. I'm taking the solgar 50 B complex. Blood tests for B 12 did not come back low but I don't know the numbers. As far as I'm aware it is water soluble so is no mmmmm your body will only excrete what it doesn't need. It has been the most noticeable in terms of fatigue in the supplements I'm taking.

@Whatnext2018

I recently had worrying calf pain, and left it a few days, it was so painful and sounds like yours,

I went to the G.P who actually saw me in person to check it.

No lumps, no swelling, not hot to touch. He said it was o.k.

Then I tried this exercise in the kitchen, the next day as I wondered if it was 'something trapped' as I keep getting a trapped nerve in my shoulder, it took 10 seconds and the pain literally went instantly

Obviously get seen if you are worried.

It could be linked to hormones though as the ligaments and things change.

Hello folks...

Burning skin sufferers... Do you find this comes on after you have eaten bread? Not instantly, maybe an hour or so? I am wondering...

Seems those that had GERD also have the burning skin. Perhaps a wheat intolerance while our gastric system heals? Thoughts?

@AndsLee not I my case - I'm coeliac and havent eaten gluten in years.

Ok...so that's that theory! 😆 Although, I was wondering if it's wheat rather than gluten.

@TiddleTaddleTat @Ernieshere No swelling or redness, just those odd things happening in them on and off. I’m thinking it’s not serious as has been going on for so long on occasion, perhaps it’s hormones too.
My emotions are also stronger for a day during period and a day or two during ovulation too..bonkers

Thanks @TiddleTaddleTat and @fedupofbed I'll invest in some b vitamins then. I need to start taking ferrous fumarate for a few weeks too, so hoping that might help (despite the inevitable bowel issues it will cause).

I have another question about eyes /vision this time. I have noticed an increase in floaters/black spots in front of my eyes in the last few months. And I feel like it's become harder to really focus my eyes properly - I don't feel I can drive very far (even if I had the energy).

But I can't work out if this is due to the fatigue (i.e. fatigue just makes my eyes feel really tired) or if it's separate symptom. Anyone else having eye problems?

I had thought it might be due to lots of close working on laptop (I was working from home until a few weeks ago, now on a sabbatical) or hours spent on phone (researching long covid etc!), but now I am not so sure.

I have booked an eye test but it's hard to get an appointment at the moment, so it's not until next Saturday.

Any thoughts welcome, thanks!