Long Covid support thread

[fedupofbed]

A thread for those with ongoing Long Covid symptoms.

Some resources very kindly collated by @letsbesensible in the last thread:

UK sepsis trust vids go.mumsnet.com/?xs=1&id=470X1554755&url=m.youtube.com/playlist?list=PL16uJ-CyqxJIJpdLhf-Ccjhdvf4uNBIie Physio for breathing pattern disorders www.physiotherapyforbpd.org.uk/
Dysautomnia webinar video go.mumsnet.com/?xs=1&id=470X1554755&url=vimeo.com/442593497?utmcampaign=5370367&utmsource=affiliate&utm_channel=affiliate&cjevent=38c74aa9fd7b11ea82d1002e0a180512 Articles, links, Resources c19recoveryawareness.com
Ricovr project videos

Started relapse yesterday, anyway merry Christmas to those of you celebrating. I’m spending the day in bed x

I read something that melatonin blocks covid so try to get enough sleep.

Morning all and sorry to hear about the relapses.

Can I ask what type of Niacin you're on please? Is it the flush one?

@Lightsabre it’s the flush one yes. Niacin Solgar 100mg

Sorry to hear you’re relapsing too @LetsBeSensible. I think particularly at this time of year it’s impossible to ‘pace’ isn’t it. It’s always a mad rush to Christmas even when we are limping along already...

@Keepdistance
Thanks for the reminder on melatonin, I’ve been taking a low dose at night for a while now. I might temporarily increase it while I fight this off.

@Whatapickle78 I didn’t pace as I was due to travel, then tier 4 happened, then I needed to go shopping for supplies to last me...pacing is great and all but sometimes life demands more.
I’m planning on revisiting videos and information so I can maybe start the new year with a new plan

My adult dd is a care worker, since June she has struggled with her asthma which has been very mild for years.
In October she was offered the Covid antibody test and that came back positive, so obviously had it at some point.
Since October asthma is so much worse , she had a chest xray which was normal so GP is suggesting long Covid and she has been prescribed all sorts of inhalers.
Today she is struggling again and contacted 111 who have prescribed yet another inhaler.
When she was a child she needed oral steroids on a couple of occassions to get it under control, GP is not happy to prescribe them because of the job she is in.
I have told her to try and get GP appointment next week, can anyone suggest what she should ask him to do, is a referral to a respirtory clinic possible?

Hi @NK346f2849X127d8bca260 I am really sorry to hear this. It must be really worrying given her job.
I’d ask for a referral to a Long Covid clinic, most of these seem to be established/run by respiratory consultants from what I’ve heard in our area at least. If one isn’t running near you yet, ask for her to be referred to a respiratory consultant?

I hope she sees some improvement soon

@NK346f2849X127d8bca260

If I were your DD I would see if the G.P would prescribe Omeprazole.

Also start Gaviscon (or Supermarket own brand) tomorrow, if you can get some, for after meals & before bed.

Covid can cause gastrointestinal issues and acid reflux, which causes Asthma symptoms.

So she could have G.E.R.D from Covid as well now.

Iv'e been on Omeprazole & Gaviscon since Covid, the relief is immense.

www.healthline.com/health/gerd/shortness-of-breath

I'm glad I have found this thread. I tested positive a couple of months ago and had mild symptoms. For the past couple of weeks I have had a real heavy pain around my lungs and aching back and feeling dizzy, dr has signed me off work with post-covid. Feels worse now than I did when I tested positive. Maybe I went back to work too soon
Hope everyone on here is feeling ok

One other thing, I keep getting pains in my breasts, the same time as the lung pain, has anyone else has this

Hi all.

@LetsBeSensible and @Whatapickle78 gah I'm so sorry to hear you were poorly over Christmas... feeling any better yet?

@weddingplanning15 I'm really sorry you're struggling too. Good that your GP has signed you off.

I had a lovely, relaxed, quiet Christmas Day with my family. With all the DC excitement I slept far less than usual though, and I have also been consuming my own body weight in naughty food (chocolate, cheese, smoked salmon). Plus slightly raised activity levels (charades probably not the best idea 😏). So surprise surprise I felt a lot worse yesterday. I guess back to the strict pacing and diet again today! It's really helping my mental health having DH around, feels mentally more like 'holiday chilling' rather than being sick and lying down all day feeling sorry for myself.

Sorry to those who haven't been well over Christmas. Hardest time to pace and eat sensibly and comes with plenty of stress.

Without wanting to jinx things, I've been mostly okay over Christmas. My stomach wasn't well the week before Christmas and I had put it down to having a glass of red wine but I now think it was due to fighting off a cold as I had a sore throat and sore eyes too and both kids had been in close contact with positive covid cases at school and had colds themselves.

Anyway, over christmas itself I have been able to mostly eat what I want and drink alcohol in moderation and I haven't been fatigued or had a bad stomach. Key things that I really think are helping me are:

1. The niacin. I take 100mg twice a day - feels like it helps me convert food into energy.
2. quercetine, loratidine and extra vit as an antihistamine.
3. gaviscon advance before bed every night (I'm also taking Famotidine but not sure how useful that is)
4. my new addition: having a 1hr lie down every day, not necessarily sleeping but closing my eyes for 20mins at least. I agree with @fedupofbed that it helps having my husband around to allow that to happen.

I'm still trying to not do too much, a little bit of cooking and tidying but early to bed, lots of sitting down in the day...

I hope I'm symptom free for longer this time...waiting with interest to see if my cycle will affect things...

Hi
I think I had covid in January - do you think that is possible? I had every single symptom including covid toe, couldn't smell for weeks, sore face and sinuses, trouble breathing, chest pains, fever, etc etc. It lasted almost 3 months but I didn't think it was covid as it seemed too early in the year. I put my symptoms down to a dodgy immune system + flu (I had blood cancer the previous year). The rest of my family had it too, to a lesser degree. My ds's whole class in school also had a covid type illness during that time - his teacher is convinced it was covid.

Anyway, obviously back then, covid tests weren't a thing, so I'll never know for sure. But ever since, I get migraines every 2-3 weeks. I've never had them before. Does anyone else get migraines? I started taking CBD every day and haven't had one since (2 months now) which is great. But I'm just wondering if anyone thinks it's possible I had covid.

I guess it would be nice to know I got it and survived, as I'm CEV and have been shielding since March.

I’ve read back through lots of the old threads, it’s nearly 7 weeks since I tested positive. Covid brought back my childhood asthma so I’m now on preventer inhalers and using my salbutamol a couple of times a day. My chest has improved a lot with those.
I’m still struggling with burning chest pain, heartburn, backache, leg pain, sometimes pain in my left arm, tachycardia and palpitations.
I had a great day yesterday, felt so fantastic I went for a 20 minute walk but today I’m awful. Did some hoovering (1 room) this morning and so I’ve had a nap and needed pain killers and a hot water bottle and can’t even think of moving again. My HR shot up to 130 hoovering so I stopped.
I was hoping to return to work this week but I’m clinic based so not sure I’m up to it. I don’t want to go back and end up off Again having gone backwards.

@Fluffypyjamasandgin it's hard to know isn't it, I think COVID was in the U.K. by January so it could be possible. Still, I wouldn't expect immunity to last ... unfortunately there have been quite a few cases of multiple covid infections now

@Indecisive12 sounds like you need to step back and return to pacing! I only really 'got' this around July when I was 4 months in... it is not easy to learn... recommend you check out the spoon theory and the SpoonieDay app. Keep records so you can see patterns - eg. At one stage hoovering a room would be a really great day for me, on others I would have to choose between that and a bath... strip things back to absolute basics and on good days prioritise food prep so you have something healthy and delicious in the freezer for the bad days

@givemeanother good to hear about your progress. Famotidine is an H2 blocker and is probably helping a lot! I'm trying to get this prescribed at the moment.

@fedupofbed glad you had a restful and enjoyable Christmas, and got to eat delicious things!! Hope you can chill for a few days and rest it out.

Had a good day here, just very low key. Feeling a bit more fatigued than usual, think it's down to my period on the horizon . Day 19 of my cycle and this is always the start of the symptom relapse , but has died down significantly since starting niacin and histamines etc

Anyone still struggling with lack of taste and smell some months after having Covid? I literally cannot taste a thing, nor smell. My appetite is there but starting to feel so depressed about not being able to taste. I’m trying the nasal sprays currently as ive read taste is connected to smell so if I can start to smell again, my taste might return. Im starting to worry I might not ever get it back. I often feel nauseous after eating, because even though i can’t taste, there is some sort of awful after taste to anything I eat, if that makes sense?

@TiddleTaddleTat Thanks for the app suggestion. I think I got excited after managing a short walk yesterday and felt I could take on the world.

My Covid test came back negative, so this really is a relapse - triggered I think by an ear infection. I haven’t felt like this since August/September, so it’s come as a bit of a shock.

I’ve had the mini relapses when I’ve done too much exercise or work, where I need to lie down for a day or two, but this has been fever, shivering, cold feet, diaorreah in the morning, migraines, sore eyes, back pain, hip pain... the whole weird range of horrible symptoms.

Tonight it seems to be dying down, I’m on day 3 of antibiotics and the ear infection has completely gone so fingers crossed my immune system will now calm the &£@! down too

Sorry to others who have symptoms flaring up now...

and @fedupofbed so glad you’ve had some fun over Xmas and managed to eat some nice food too. It’s been long overdue!

Love to all xx

Ah thank you @Whatapickle78 ! And so sorry about the hideous full on relapse. Fingers crossed you're through the worst now. That does chime with me as the cold I caught back in October really knocked me for six, with a return of many of my earlier symptoms.

@Fluffypyjamasandgin I'm convinced it was around in January, if not before then (I have a friend who thinks her daughter had it in December - she was hospitalised with a mystery respiratory infection plus multiple other odd symptoms). That's really great that you're almost fully recovered.

@givemeanother sound like you're doing really well! I agree with what you say about 'proper' resting. I find it difficult to do for long periods but I make myself have regular 10 minute breaks throughout the day with no sound/external stimulus.

@TiddleTaddleTat glad all is well with you too, and hope the hormones don't make too much of a difference this month.

I've had another relaxing day. DH drove me to a beautiful local viewpoint - I sat on a bench for a bit, and got some fresh air and sunshine.

I’ve just discovered this thread. I’m 6 weeks in and my main remaining symptom (apart from cough and tiredness) is gastric. I feel sick and have stomach pains a lot of the time and am only eating about half of what I would normally eat. I just can’t face food most of the time. I’d be so grateful if there is any particular advice anyone can offer for this? Thank you

@tiddletaddletat
@fedupofbed

My DH has colleagues who fly back and forth from various places in China - it's possible he caught it from one of them back in Jan. Or he could have caught it from Joe Bloggs in the supermarket - will never know!

I got an antibody test (blood sample drawn by a nurse) in August, but I had no antibodies left, if it was covid.
I also feel sick a lot, and I didn't before I was sick with possible covid in January. CBD has made the sickness much less severe, but it's still low level there some days. When I had the migraines, the sickness alongside them was horrible.

Hello everyone and wishing you a happy new year of better health. Have had a two days bedridden relapse over Christmas which was either (I think) reinfection response or histamine overload. Two day headache and utter exhaustion. Took a coronavirus test but it was negative. Thanks for everyone’s tips on here, I am trying a few things but main difference in general seems to be from rest and drinking water. When I get a histamine headache I find vit c and vit D work to reduce it. Good luck with your symptoms everyone.

I'm interested to hear that some of you have been taking Niacin. I bought my DH multi vitamins to try to boost him a little and they contain Niacin. Do you think this will have the same benefit or is there something different in the Niacin suppliment that the multivitamin wouldn't have? At this point he'll try anything. It's just so horrible seeing the effects months on in someone who is usually so fit and active. He's built a daily walk up to a mile most days now, albeit very slow but that's great progress and he's cutting tea out as we drink loads of it.

Hello all, good to read you’ve had a nice Christmas and sorry to those who have relapsed.

@Tomcullenisahero generally speaking the multivitamins contain a small (18mg ish) amount of B3 Niacin as nicotinamide. Your husband would need Niacin as Nicotinic acid, or ‘flushing’ type, if he wants to try it. The general advice is to start low (50mg) and work up to 300mg spread over a day.

He might also consider zinc, vit c, selenium and quercetin. They’re the main supplements people are reporting success with. There are doses knocking around upthread and on the web.

Hi @Tomcullenisahero just to add - I tried the non flushing Niacin at a high dose (bought in error) for about three weeks and noticed no difference.

I then started on 100mg (flushing) Solgar Niacin instead per day which is a bit higher than 50 but I had no adverse effects. I noticed an improvement to my energy levels and brain fog after only a couple of days.

It’s really worth your husband trying in case it helps, though do check with your GP first in case there is an interaction with any other meds he takes or a medical condition...

Good luck x