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

@confusednortherner, the sleep/rest is so important for the body to recover - I was exhausted for months but feel less fatigued now. Hopefully your GP can sign you off for a few weeks - glad you're getting a chest x ray. Quite often you can just book one in once the GP has referred you.

Glad to hear the Montelukast is working @AndsLee. Is it a steroid inhaler? I might ask my GP about this too.

@LetsBeSensible. Nah, tablets. It's also not a steroid. I posted a link earlier that will tell you about the drug.
www.nhs.uk/medicines/montelukast/
I predict one more cycle through the symptoms though. But I definitely feel markedly improved. Something has 'shifted'. I know the drugs are 'masking' but my hope is at the same time my body is resetting and retraining.

Happy new year all!
Good to hear of some continuing improvements - @AndsLee gives me hope!!

@TiddleTaddleTat and @givemeanother how did you know you needed to increase rather than decrease stomach acid? I know low acid can give some similar symptoms to excess acid and I have had terrible silent reflux at anywhere between 1am to 6am. Am avoiding pantoprazole where I can (because I have SIBO and don't want to make that worse) and using gaviscon advance and being careful what I eat in the evening etc. But I bought some apple cider vinegar in case it might help but haven't dared take any in case it makes my acid problem worse. I have had weeks where I have felt an almost constant burning in my chest and other weeks where the acid seems under control.
Interested to hear your experiences with the enzymes and increasing stomach acid.

Also has anyone tried tart cherry juice? Saw it recommended on the long covid Facebook group but I can't remember what for!

For me the digestive/acid issues and the permanent fatigue (can barely leave the house) are the things I most want to address.

Thank you!

Happy New Year all! May we all get back to full health this year. Xx

@seriouslynonames it was the naturopath I'm seeing that recommended the digestive enzymes . She did so after looking at the blood tests requested by my GP, I guess lots of low level deficiencies that suggested I wasn't breaking food down correctly. I think low stomach acid is common in chronic illness and stress. In your shoes I'd want to talk to a stomach specialist or nutritional therapist before using.
Tart Cherry juice is antihistamine I believe. Haven't been able to get hold of any yet myself.

Hi everyone,

@TiddleTaddleTat I'm glad you continue to improve. The naturopath I saw recommended the same products that you have... Nutrigest and the bovine colostrum, plus a few others. I haven't taken them yet though as I feel like there's too much else going on at the moment with the supplement stack, antihistamines, antivirals and mini pill. Also it's all so expensive isn't it?

I've also just had my letter from the ME specialist, who has prescribed me LDN (which I'm excited about but putting off starting for now as I'm trying to stagger everything), and also suggested a really obscure herbal medicine used in Japan and China called Sho Saiko To - this seems very left field to me and I'm really interested in chatting to my acupuncturist about it.

This afternoon I have my first Perrin Technique session with an osteopath. It's all go here!

I'm still feeling pretty stable, and dare I say it... my PoTS-y symptoms seem to be decreasing. Still not at the levels I was in September but feel like I'm going in the right direction now. The jury's still out for me on how much the low histamine protocol is helping... I suspect it's more that both DH and I have been off work so I can properly recuperate. As long as I show improvement I'll continue with everything though.

@seriouslynonames I'm with you on the fatigue, it's awful isn't it? I think tart cherry juice has lots of natural melatonin, so is recommended before bed.

I've been away from this thread for a couple of months. I'm in my tenth month now. I worry that I've recovered as much as I'm going to. I haven't had a temperature for 3 months, I'm having much less chest pain and my nausea has long gone. Sadly, though, I'm constantly breathless and exhausted and have persistent coughing fits. I also have dizzy spells.

I have been officially diagnosed with long Covid by my GP surgery, despite never having a positive test and never having an antibody test.

I'm feeling terrible today, the pain across my chest is never ending and I've had to retreat back to sofa after washing up some bits. I've made myself eat breakfast and lunch which I've not done for a week in the hope it will help. My head hurts and I really can't see how I'm going to make it to work Monday but don't feel I can call in sick first day back after holidays as no one really knows how bad I've been.
If anyone has any miracle cures for the chest pain that goes over my back too please do share as I've a fairly strong pain threshold but I've been in tears over this.
Thank you

Hello again everyone, pretty rubbish day today. So fatigued I can’t make myself get off the sofa to make some food. I was travelling all day yesterday and wonder if getting tired yesterday is what caused me being so exhausted today. I do get good days and bad days with the tiredness. I work in school and had previously had to take the second half of the week off as had nothing to give. Anyone discovered anything that helps for the fatigue? I was feeling great September/October, did 10000 steps a day but haven’t been doing anything since November. Still have palpitations on some days. And my windpipe most of the time feels like it’s not clear. I thought I was getting a cold before Christmas, mildly sore throat but that is gone. Make me wonder if the sore throat is still post covid and whether, like someone said, our body goes into overdrive encountering other viruses.

@confusednortherner I used to get terrible chest pain that spread to my back - impossible to eat I was in so much pain. The things that used to ease it a bit for me were hot water bottles, alternating between front and back, drinking lots of warm herbal tea and some gels like voltarol.

I think my pain had two causes - some was general inflammation and more muscular but in the main I think was gastro related - like trapped wind causing more pressure (and I was very belchy). Taking gaviscon advance after every single meal and before bedtime helped with the gastro pain when it was really bad. I now only take it before bed...and my chest pain is mostly gone or only very mild occasionally now.

Hello. Could I ask a couple of questions please? What are your symptoms of long covid? Did you initially feel a bit better then find that your recovery just stopped? I am asking as someone who tested positive 11 days ago but has had symptoms for 17 days. I just feel like I am having no improvement at all.

I'm sorry @Iamsodonewith2020 it's such a horrible virus. Just keep resting, lots of fluids, vit D, C and zinc. I don't think there's a single answer as everyone's story is different. A lot of people seemed to show improvement, then overdid it a bit then relapsed. Personally I just stayed ill for a long time. Though 17 days seems like a long time, it doesn't indicate you'll go on to get Long Covid, so try not to worry and make yourself feel worse. Someone correct me if I'm wrong but I think 1 in 5 have symptoms for more than 5 weeks and 1 in 10 for 12 weeks or longer. Wishing you a speedy recovery.

@fedupofbed that's interesting that they were the same supplements! Same naturopath? Mine is up north.
Yes it is all very expensive. I really don't have the money, a relative lent me some (to be paid back) which is what I've been using. Fortunately the gamble paid off as I started feeling quite a bit better since starting the range of supplements and with the dietary advice she gave back in September onwards: however it was only when I started the low histamine diet, antihistamine and quercetin that I saw a big change, then niacin topped it off. I do think that the supplements I've been on for the past 3 months have addressed a lot of underlying deficiencies that I've had for really some time, so perhaps the niacin made such a difference because the rest was already falling into place.
Supplements don't have to be expensive though, but I've learned to read the packet as there are so many crummy bulking agents added to most of them, so what you pay for in the pricey ones is higher quality fillers, essentially.
I'm trying to be more careful about supplements now and don't want to overdo it, am trying not to add anything new in and am going to finish one thing before starting the next.

Hi all,
Still bleeding, has been two weeks now more or less.

Think the cold is making symptoms a little worse as in the soreness in heart area and the ‘Something in the throat’ feeling

Going to up my dose of Niacin from one to two tablets tomorrow.

Wanted to ask about your partners/family members and if they became sick or are still struggling too?
Dp most likely had it in March when I did, I remember him having high temp etc, but then when I was very bad in May/June and ongoing symptoms ever since, he was fine.
Possibly since around August/September he’s had periods where he’s very fatigued, stressed and has the right test and finding it hard to breath. He’s particularly bad this week, dodgy stomach always too (which we both had in March)
Does that seem odd, that we could both be suffering with long covid? Are the chances of that pretty low? Dp is never ill, ever. He’s a good weight, rides his bike, surfs etc, the only real minus being he smokes. Wondering why we’ve both got this so bad.

@Mittens030869 hello again!
I am thinking I’m not going to recover any more than I have. I don’t think I will work again. There would have to be a marked and sustained improvement to convince me I might.

@Whatnext2018 my husband also has symptoms of long covid, but less severe than mine. I don't remember him being sick in March when I was, but from April/May he would have the odd breathless day - he has asthma and suffers badly with anxiety/stress so we put it down to that. He also on and off had the chest pain in the sternum through to back and reflux.

In July he got a recurrent sore throat with very bad fatigue and took a long time to recover, ultimately having 2.5 months off work and then phasing back. He's been mostly okay since, with the odd tired day, still reflux but not painful. He also gets a minor flare up of symptoms if he exerts himself, eg long walk.

My 7yr old also had symptoms for 3 months. She had a cough in March and every 3 weeks would develop fatigue, sore throat and cough again. Cleared up for her when I put her on a probiotic and good vitamin. But she still gets rashes and spots. It's only because of her symptoms that I initially began to think I might have long covid...

I think more people have long covid than are counted. My husbands symptoms are manageable and he's not spoken to a doctor about it, but he still has to be careful. I am jealous though that he can eat and drink as he wants!

@LetsBeSensible

Hello to you, too. Im sorry you're going through all this as well.

I'm thinking the same as you, sadly. Unlike you, I wasn't working before I caught this virus, but I have two adopted DDs of 11 and 8 and my DH has had to take over most of the work at home. He was working from home and the stress became too much and he had to go on sick leave in November. He will be back at work from Wednesday.

Our DDs are classed as vulnerable so they will both be able to go to school if there's a lockdown. The problem there is that my DH has asthma so potentially vulnerable if he catches Covid. It doesn't look as though he will be offered the vaccine anytime soon (although he does have the flu jab every year).

How is everyone doing?
The school closures, though expected, have still come as a bit of a shock here.
It's going to be exhausting trying to manage and likely impact on my recovery.
Feels like employers are being a little less generous this time round with children being home this time.
Anyone else feel this way?

Hi @TiddleTaddleTat sorry that hard. I really feel for those of you going through this with kids to look after.

Plodding on here. I’ve been slowly improving over Christmas. As long as I take it very easy and pace my day, my symptoms are manageable and my energy seems to be improving again.

I’ve been taking the SNRI medication for 2 weeks now and I’m feeling the benefits — everything feels more manageable and less overwhelming.

On a trivial note... realised today the last time I put fuel in my car was a year ago and I’ve still got 3rd of a tank left! 😳

Hi everyone

@TiddleTaddleTat my kids are a bit older so less stressful in some ways but the logistics of trying to set up 5 work stations with limited tech and space, and a slightly dodgy internet connection, are challenging 🤪. Trying to look on the positive side, at least I'll have some company in the day.

I've postponed my osteopath sessions, which I'm gutted about, as was feeling really hopeful about this treatment (first session went really well). But I just felt I couldn't take the risk - the area she works in has a super high rate of infection. I'll continue with the daily exercises, and will review in a few weeks.

I'm generally still in a positive state of mind - just so delighted that my PoTS symptoms are subsiding. Always feel like I'm teetering on the edge though!

@Mittens030869 I remember your posts from much earlier on, and I'm sorry that you and your family are still having a rough time. 💐

@MillStone cross posted, ah you are like me, plodding along! So glad there's improvement, albeit slow, and also that the meds are having an effect. All the money I've saved on petrol has gone on supplements and therapies!

Thanks @fedupofbed so great that your PoTS symptoms are letting up. Sorry about having to cancel your osteopath though. Everything is so difficult isn’t it! Sounds like a sensible decision though 🙂

By the way.. backtracking several posts, I’m on the same gut health supplements as you and @TiddleTaddleTat . Must be a naturopath thing 😂

@MillStone @fedupofbed glad to hear you both sound like you are on a steady recovery?

Had another good sign here as lead up to my period resulted in no relapse and no sleep issues this time.

Still on 2 x 10mg loratidine daily but thinking about dropping down to 1.
Ate a chocolate today. Waiting to see what happens!

Have also started increasing my walks incrementally. Furthest so far has been 800m, which includes a few steep hills too, so not too bad. So great to feel 'free'. Although my heart did get to 125 on my slow walk yesterday so will probably take today as a physical rest day.

@TiddleTaddleTat brilliant, sounds like you’re making great progress. I know what you mean about the hills!

Feels like a steady recovery 👍🏽

Oh wow @TiddleTaddleTat that's fantastic progress, especially with the hills. How many steps is 800m?

Hope you enjoyed the chocolate!