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

Hello, hope everyone's doing okay?

I've not posted much lately as there seems little to say - I'm just plodding along in the usual manner. As ever I think progress is there but it's so small and gradual that it's often hard to tell. My heart rate is definitely lower though. And I managed a 3 minute walk, a 10 minute rest, then another 3 minute walk today, which is the most I've done for months.

I'm thinking of lessening my niacin dosage, and being less strict with the antihistamine diet for now as I genuinely can't notice much difference being on them. Either I'm not being aggressive enough with this treatment (ie I need to take more antihistamines, famotadine, etc) or it's just not working for me. I have my appointment with Dr Peers in a couple of weeks which will be very interesting!

I also have my Long Covid appointment next week, and an appointment with the ME CFS Service later in February. All go!

Could I ask a question for all of you on SSRIs? How much do you think they've helped with Long Covid recovery? Do you think they've actually helped with symptoms, or just helped manage them? They seem to have been a godsend for some people on other forums. Also is anyone taking SSRIs with niacin? @MillStone how are you getting on with yours? Hope they're still helping.

Love and healing to all. Xx

Following

Hey @fedupofbed , hope you’re doing okay. It’s great that you were able to get out for a walk and all of your upcoming appointments sound very positive.

I’m taking Duloxotin which is an SNRI. I wish I’d started it months ago but I didn’t feel ready. When my Dr suggested it he said it was important that I was on board.

It’s been about a month now and I’ve seen a really big difference — Everything has improved in varying degrees. I think it’s calming my whole system down and helping my mind and body to rest and heal. I’ve suspected for a while that stress and anxiety were hindering my recovery and triggering relapses.

Other than that I’m still on the crack stack but I’ve reduced the niacin to 200. I’m also taking Cetirizine, the naturopath’s gut potions and a few other supplements every day.

SSRI or SNRI Could be worth a try? By the way did you start the LDN yet?

Hi @MillStone yay that's great! So glad you're improving! I completely get what you're saying about being onboard, and I think it's about time I finally started taking them (I have some Sertraline here waiting). I'm just so wary of the side effects though - especially as I know they can make you feel worse before getting better. I never felt I could face that. Also I don't like taking so many different things!

I'm now currently on Aciclovir, Loratidine, mini pill, the niacin stack (also cutting down to 200), omega 3, electrolyte drinks,high dose vit C and vit D. I stopped taking NAC as it gave me really bad heartburn. I'm contemplating restarting CoQ10/PQQ and also maybe the bovine colostrum, curcumin and Boswellia. Phew makes me tired writing all that!

I haven't started the LDN yet either... I'm trying to stagger everything as I'm a bit concerned about building up intolerances to all these things.

Thought I’d check in... I’m managing walks and not having as many joint issues but I’ve still got chest issues. When I went for a walk this afternoon my chest felt really heavy and congested and I’ve got a weird ruttle / flutter on one side when I breathe. Anyone else had similar. I’ve got a follow up with the asthma nurse this week my peak flows dropped so my meds may need adjusting. I’ve got a phone consult with a doctor to go over the last of the symptoms too.

@Moodgie my doctor referred me. In October 🤣🤣. My heart still odd sometimes but generally I am so much better. Am exercising now gently, my lungs protest if I do more than a few minutes cardio which is a worry but hopefully will get some answers when I finally get my appointment. I am seeing a Thoracic consultant. I have just got to try and dodge it at work now as its ripping through my school 😩

@fedupofbed sounds sensible to stagger everything. The NAC is horribly acidic so it’s not surprising — a lot of the supplements we are taking are!

I’ve never taken AD or anxiety medication before. My dr has suggested it many times over the years but I’ve always opted for alternative approaches.

Sending good vibes your way if you do decide to start. My only side effect was feeling a little bit sick for a few days, so I’m sure you’ll be fine 😊

@amyj606 sorry your chest is still painful and good luck with your apts. When it’s really cold out I wear a polar buff over my mouth to protect my lungs.

Thank you my chest just feels really congested and heavy. I make sure I wrap up well. I'm hoping the asthma nurse and doctor might be able to shed some light on things. Overall I'm doing loads better its half hour walks now! It can just be super frustrating at time.

Thanks @Kitcat122. Last time I spoke about it to my GP, she said it would be for hospitalised people. I have another ECG and blood tests this week and will speak to her after that again.
I have also been having this chest heaviness that has been really frustrating as autumn time I thought my chest was fine. And now it feel like my oesophagus is squashed / tight chest - not sure how to describe the sensation. Anyone similar, after all this time?

@Moodgie

Thanks *@Kitcat122*. Last time I spoke about it to my GP, she said it would be for hospitalised people. I have another ECG and blood tests this week and will speak to her after that again. I have also been having this chest heaviness that has been really frustrating as autumn time I thought my chest was fine. And now it feel like my oesophagus is squashed / tight chest - not sure how to describe the sensation. Anyone similar, after all this time?

When I'm out on my walks my chest feels really heavy and congested kinda like when you run and get that weird feeling in your chest. I do hope that makes sense! I've also got a weird feleing when I breathe on one side. I go from feeling like my throat is dead dry or it feels really phlegmy! I'm hoping the asthma nurse and doctor might be able to help

Hi all,

Was looking through the old threads we were all on, really needing some positivity that this will eventually end, so tagging lots that were in a bad way but haven’t been on for ages, to hopefully give positive feedback and that it most likely, hopefully means they’re better f💐

@mumlurker @Mittens030869 @moominmamma33 @Needsomegoodnews @MelClare @baroqueandblue @Mumpop00 @longshot @KatySun @Egghead

There was the lady who campaigned a lot, but I forgot her username, something about lungs 🤔

Hope it’s ok to join here ? I was on the original lungs thread back in March and ten months later I’m still not recovered . My gps surgery are awful as they have refused o see face to face patients since March last year . It’s a tiny rural surgery so they just have a duty dr doing telephone consultations. The major symptom for md along with all the others is a congested feeling chest and a rattle .. I call it cheese grater lungs now and I’m interested to see lots of you are the same ? I managed to get a respiratory referal which was then cancelled ... indefinitely 😕

@Whatnext2018

Thank you very much for including me. I'm a lot better in some ways; I haven't had a temperature since the summer (August) and I haven't had any nausea.

Unfortunately, I still have coughing fits on and off, breathlessness, dizzy spells and exhaustion. I have shivers regularly despite not actually having a temper. I also suffer from 'brain fog'; I forget words and names and recent events. These are things that have never been an issue before.

There hasn't been any improvement with these aspects, and I'm concerned that there might not be now. I already had CFS as a result of pneumonia in April 2019 (it started as a bad bout of flu), but I was able to function before Covid. Now I get breathless after any kind of activity, and need to lie down again.

@Spacecadetagain So sorry to hear you’re still not doing too well
@Mittens030869 Thanks so much for replying to my tag, sorry to hear you’re still not completely better. I’m pretty similar to you, lots of brain fog and mixing words up and trouble with my memory (was very sharp before this, can’t see myself returning to teaching until it goes, my head seems to get overwhelmed really easily) I still experience nausea and some dizziness and stomach troubles too.

I’m hoping 🙏 to see some of us have completely recovered.

I seem to be going backwards recently and am really hoping it’s short lived. My chest and back is so tight again and the back of my neck and legs. I haven’t had since back in spring. Getting paranoid I’ve been reinfected, but I’m seeing lots of people on the forums are feeling bad at 10 months, so perhaps it’s a relapse at 10 months 🤷🏻‍♀️
My Dp is also suffering and we seem to spend most weekends recently just trying to survive the weekend with toddler Dd. It’s awful to see my previously very fit Dp having to go and have a sleep after a short walk to the beach or having chest pain after carrying Dd on his shoulders for a few minutes.
I don’t know, I’m usually pretty resilient and positive but feeling very down at the moment. Just want this all to end

It wasn’t a lady with lungs in her name title, it was @godhelpusall (massive brain fog)
Hoping you have improved lots?

@Spacecadetagain

Hope it’s ok to join here ? I was on the original lungs thread back in March and ten months later I’m still not recovered . My gps surgery are awful as they have refused o see face to face patients since March last year . It’s a tiny rural surgery so they just have a duty dr doing telephone consultations. The major symptom for md along with all the others is a congested feeling chest and a rattle .. I call it cheese grater lungs now and I’m interested to see lots of you are the same ? I managed to get a respiratory referal which was then cancelled ... indefinitely 😕

It sounds similar to what's happening with me in terms of symptoms. My throat either feels dry or phlegm-y and more when I'm out it feels congested. Really hoping the asthma nurse/ doctor can suggest something. I do wonder if it'll ever go 🤔

@amyj606 yes I get that too , I feel like I need to clear my throat all the time , it’s as though I have phlegm sitting in the bottom of my windpipe .. Lots of research (googling) suggests that can also be caused by GERD which seems to be another by product of this . I feel very demoralised to still not be well 10 months later

[quote Spacecadetagain]@amyj606 yes I get that too , I feel like I need to clear my throat all the time , it’s as though I have phlegm sitting in the bottom of my windpipe .. Lots of research (googling) suggests that can also be caused by GERD which seems to be another by product of this . I feel very demoralised to still not be well 10 months later[/quote]
That does sound pretty similar when I went to see the asthma nurse I really was hoping it was all to do with that but deep down I know its not. I've still got low grade joint pain but its the issues with my chest that I find more bothersome. Its so odd as its dry or then feels really phlegmy and its so much worse when I'm out. I've not gone back to work I was due back in January but the agency (education) I work for suggested not with being vulnerable (asthma) and now they have said they are only furloughing some staff. Its all just a bit of a pain. I'm looking for alternative work but its such an odd time.

Hello all...

Vast improvement...

Very faint breathing through dust sensations, but no SOB accompanying it. Odd bouts of prickly skin, but these subside quite quickly. Much less hot flushes. I am aware my symptoms are being masked by treatment, but hope after the 6 months my body with have learned to behave. I expect a couple more mild cycles of symptoms, but have enjoyed most foods over Xmas, and had the odd drink. Feeling grand... Almost back to normal... Keep the faith folks... Xxx

@AndsLee I'm so pleased you're still doing well.
I think one of the different things you to to me is take the DAO - are you still doing so, and how many times a day?

I am otherwise generally okay, managing home schooling and a bit of work in between. But I have to watch my diet and cannot drink alcohol or caffeine at all. I also don't think I could tolerate any exercise...but can walk for 30mins or so.

The main meds that made a difference to me are the Niacin stack and also famotidine (the latter I think is solely responsible for my chest pain diminishing). I'm trialling not taking gaviscon at bedtime - 3 days so far without a problem.

Hi all I hope its okay to follow this. I was on the original lungs thread from spring, it does sadden me that I still recognise the names and you still struggling.
I spent a lot of time on the fb group but it is now so big and overwhelming albiet fantastic support.
I have been saving up for the stack ( quite a lot of money to me at mo) and wanted to see if it really does help. I have been taking loratadine past week but no real difference tbh although my husband had improvements on rash and headaches.
I wrote letter to doc in June after getting ill with classic symptoms in March. This letter outlined phantom smells etc. Months later a GP picked this up as more people said the same and she herself has LC.
My immunity probably gone now but am left with terrible fatigue/fog/joint pain and GERD.
BUT before she referred me to post covid clinic I gad to have bloods done.
I have had underactive thyroid for 15 years always managed by meds no worries.
But since autumn had worsening of LC symptoms and a terrible depression lack motivation and weight gain. Thought due to endless lockdowns/ peri/ being ill so long. But bloods show I am severely hypo eith TSH of 20 and F4 level 4. No wonder I am so depressed and sleep 15 hours a day.
Those of you with Thyroid please get levels checked as it certainly isnt helping if this awful virus burns out thyroid too. Be interested to see if any one else the same? Hoping you all have a better week X

Oh to add ended up in hospital twice now diagnosed severe asthma on top of symptoms. I think being auto immune its made me ill for longer?

@givemeanother
Meds are: Montalukast in the am, Loratidine at 4pm, Famotidine at pm.
Supplements: DAO each morning with a multivitamin (and minerals), an HCL tablet, NAD+ supplement, probiotic and Vit D3.
The DAO tablet contains quercetin.

Hi everyone

I haven't posted in months and haven't really been keeping up with this thread - which is a good sign! I was basically bed ridden for four months from march onwards, and began to slowly recover after that. By August I was able to go for short 15 - 20 minute walks quite comfortably and by September was able to do short bike rides. Things have really been on the up since October. I have a lot more energy and am able to exercise again - bike rides, weight lifting, hill walking - makes me tired and I'm sleeping a lot, but doesn't seem to be causing me any major issues. My lungs still feel a bit stiff sometimes and I occasionally have weird heart sensations but they're very very minor and getting less common. So, a year on, my main issue is needing lots of rest. I would say though - I was in a position where I was able to rest a lot - my work contract ended in the autumn ( and work were good about time off to recover during the summer). I haven't worked since autumn so have been able to take things easy (pre-planned sabbatical, so don't have the stress of looking for work right now - I've been very lucky). I'm hoping by March (one year covid anniversary) to be pretty much fully recovered, minus a few niggles. Hope this gives some of you hope!