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

@fedupofbed think it's about 1500

@TiddleTaddleTat So glad to see you’re making such positive progress 💐

Are experts any closer to finding out why it affects some so badly and others not?
The amount of posts I’m reading about how the majority had bad diarrhoea for a couple of weeks and were cold or had a temperature and then were fine etc is madness.
When I think back to the worst part in May/June and that odd, petrifying anxiety and heart palpitations, body tingles etc etc..what is it about some of us that it affected us so badly? Can’t get my head around it

@Whatnext2018 there was a video by a naturopath who speculated that having any inflammation could exacerbate symptoms. So major inflammation such as heart disease, diabetes, etc are obviously risk factors for severe illness, but minor inflammation could also play a part: for example, allergies, autoimmune conditions or even 'alpha' type people who may be overdoing it but not realising it - there seem to be quite a few runners/athletes on other forums. I'm definitely not in that category, but convinced that having coeliacs made me more susceptible. I reckon vitamin D deficiency also plays a part. Also maybe hormones as Long Covid seems to affect women more than men?

In regards to long Covid pathology this is interesting:

tschmauck.medium.com/finally-evidence-to-why-long-haulers-are-still-ill-512d54f8b164

The researchers who’ve published the paper seem to have identified the markers that are off in long haulers which means others can now solve the problem of how to fix them.

There’s a link to their paper In the above article and also a link to a good YouTube interview.

@Whatnext2018 the naturopath I've been seeing puts this down to many people like myself thinking they are healthy, because outwardly they are, and don't necessarily have 'disease' but actually having poor functioning of various systems, the body being out of balance, etc.
If you think about the way that COVID affects people - some die, some are hospitalised for long periods, some get long covid, some get long covid and recover quickly, some get a short acute covid, some get asymptomatic covid - there's a whole spectrum.
While I was outwardly 'healthy' when I caught covid I was working very hard, commuting a long way, under significant emotional stress, and over the past few years have had various niggling health issues that are autoimmune in nature.

Then there's the NAD+ deficiency. In terms of the results people are seeing on the long covid group, it does seem like the niacin stack and low histamine diet is making a significant difference for a good proportion of long haulers. I think that this must have played a part for me because of the improvement it has caused for me.

@MillStone thanks for sharing that, I did glance at this before but couldn't see where treatment came in. As I understand these are just markers of what's going on? Good to see that these have been identified and that the researchers feel it is a treatable condition. I'll check out the video now.

The only symptoms I seem to be getting over the past couple of weeks are PoTS symptoms during my period. This is a consequence of blood loss. This is making me more and more secure that I've got something of the right treatment stack for my personal circumstances. However the variable that I can't control so easily is emotional stress, and I'm going to be under it increasingly now that schools have closed. So we shall see...

Glad to see some of you are feeling a little better.

I spoke to my GP today about trying Montelukast as AndsLee has benefitted breathing wise. He said that unfortunately it wasn't their first line as the side effects can be severe including psychiatric disturbance so that put me off! He's trying me on a powder inhaler (didn't say the name but picking it up later).

Asked the usual question about 'could it be anxiety?'. I felt like crying with frustration as I know they feel it is. I have experienced anxiety a few years ago and it did affect my breathing for a few weeks which became ragged, had a lump in my throat etc but I was still able to walk uphill, exercise, work full time etc which I can't do now. It's so bloody frustrating when they can't find anything physically 'wrong' yet I feel like I'm slowly suffocating.

@fedupofbed @MillStone @TiddleTaddleTat

Thank you for the info, it’s interesting to see how some are barely even affected and others like us, still suffering almost a year later,
I’ve always have hormonal issues which they’ve never been able to officially diagnose. Painful periods, trouble conceiving etc, they thought possible endo, so that could be an issue? My only other health problems I’ve ever had are kidney stones and hay fever (never much of a problem) my immune system was always really strong and I barely had colds/coughs/flu.
The report sounds really optimistic 🙏 I wonder if it would mean a certain treatment indefinitely or things would ease over time.

Working myself up to taking more than one Niacin tablet a day, I’m not keen on the occasional strange burny, itchy feeling, my face often feels strange after taking them also 😅

Back to the strange head fog and mixing up of words etc, almost feels like things are too much to process and my mind is all jumbled up, leaving me confused, having vivid dreams also.
Spent the better part of the afternoon yesterday searching for my car keys and finding them on the stairs, a really bizarre place to have put them,

@Lightsabre Sorry you’re feeling so crappy. The assuming it’s anxiety part is really frustrating. I’ve had anxiety in the past but this feels totally different, doesn’t it.
During my peak worst time, the docs were convinced of it (long covid wasn’t as understood back then) they were chucking all types of calming tablets and anti anxiety meds at me.

*Had hormonal issues

@Indecisive12
@confusednortherner
This just released by one of the main UK long Covid organisers. May be of interest to people in early stages or not realised it was long Covid
m.youtube.com/watch?fbclid=IwAR3SzH4QlzgDn5Dr4Mqf3uFuvRUxFJNQXyAvt9CJ8anI7YTyYJenxW8K7a0&v=0EaHFuGJl78&feature=youtu.be

@LetsBeSensible thanks for this, it was really useful. After properly resting I’m finding my HR isn’t going as high and so my palpitations aren’t as frequent or as strong. I’m very much pacing myself. My achievements 2 days ago we’re making lunch for my children and extending my walk to the end of my street. I was tired yesterday from this however but not as wiped out as when I’ve really pushed myself.
I’ve introduced the low/no histamine diet last week but am wary of the niacin stack until I get a blood test from my GP so I’ll request that.

Latest update from me (10 months in). I had a lung function test on Tuesday to explore the shortness of breath, feeling of tightness in the chest. It was hard work, but I passed, no damage to my breathing. And more importantly to get to the hospital I had a 20min walk to and from the station and I was fine - a month ago I wouldn't have been able to do it.

I also had a range of bloods done by the respiratory department, one came back abnormal which was raised ferritin. The doctor said this can be a sign of inflammation and will write to the GP to have it repeated in a month or so. He also said he will tell the GP to refer me to a long covid clinic if I didn't feel back to my baseline within 6 weeks. So so nice to have a doctor that listens.

That being said, I have had a good week. Lower histamine foods combined with the niacin and querecetin, famotidine is working for me. Next week my period is due so we'll see if it stays well...if not I'm going to talk to the GP about the the mini pill.

Now I'm just worrying about whether exposure to a train and the hospital will have re-exposed me to covid. 1 in 30 infected in London at the moment and I saw so much mask non-compliance 😡

Found on the Facebook Yoga and Pt for coved recovery page:

URGENT survey for members in England

Following the announcement on December 18th about NHS England Long Covid clinics, we are looking to collect feedback on people's experiences of seeking referrals to these so we can report any issues to the NHS England Long Covid Taskforce and to policymakers (when I say 'any issues', clearly I don't mean at an individual level!). Please answer this short survey as soon as possible - it only takes a few minutes.

[https://forms.gle/Enh7nV9PSB8SPLxM6](forms.gle/Enh7nV9PSB8SPLxM6?fbclid=IwAR1vRn20Y1LmiSDncZXLaK9cK5Oy3pfPj5E7Hobcv0Y7iSGPNPk1t2N08R4)

We are sharing the survey in this group first to test it out ahead of launch, so would be grateful to hear if you have any suggested changes. If you have problems accessing or completing the survey, please note in your comment the type of device you used and which browser.

Many thanks

Has anyone had any luck with long civic clinic referrals?

I am wondering about asking my GP about referring me to the long covid clinic. Not sure why really, just fancy a bit of treatment? Plus one of the reasons for not referring me was that we didn’t have one, and we do now.
I’m a bit concerned that over the past few months I’ve been dropping things that I am holding. I can’t say I’ve seen this mentioned anywhere in the long covid info or personal accounts.

I just wanted to pop on with something I thought might help some of you. I don't have Long Covid but I did have a serious post-viral something for many years. I had POTS in connection with that too so wanted to share this in case it helped others.

I don't know if Long Covid is the same exact thing as I was experiencing but I suspect there is significant overlap in many cases. Everything I'm reading suggests that in terms of how people are reporting their issues.

The thing that got me well was an online programme called Curable. Please have a look at it and give it a try, even if you don't think it looks good at first glance. It works on the basis that acute stress in the form of a virus (or other types of stress or inflammation) can overwhelm your body in various ways and your nervous system overreacts and can get into a spin it can't get itself out of. This can result in a huge variety of symptoms, some serious and horrible to live with. And Curable considers them to be 100% real by the way. The programme works to calm your nervous system down over time. It's very clever.

I was very sceptical when I heard about it but it's got me from being someone who was stuck in bed most of the time and unable to walk much to someone who is getting up mountains again. There is absolutely nothing threatening in the programme - you aren't asked to push yourself in any way. It's all v gentle and explains the science behind post-viral stuff well. It just works. It's something to try if you aren't being helped by your GP and they refund you too if it doesn't help.

And if it also helps, I met a friend for a walk over Christmas. She was really poorly with Long Covid for about 4 months. When I saw her she'd just been for a long run two days before in the area where she lives (which is extremely hilly). She is so much better than she was. I know how much it can help to hear others' recovery stories.

@Peggyslantern Thank you for such an informative and uplifting post!

Hi @Peggyslantern thank you so much for posting. You're right, it's always lovely to hear of people who are recovering well.

What you went through does sound very similar, and I'm really interested in what you said about Curable as I downloaded it a while back... I never actually used it though as it seemed to be very much focused on managing pain (I'm not really in any acute pain, just loads of discomfort, fatigue and malaise). I will definitely have another look.

@LetsBeSensible you should definitely try get a referral! You've been neglected so much... did you ever get a date for ENT and ME clinic? @moodgie my GP was trying to refer me just before Christmas but was having admin problems. I think sadly hospitals will be completely overwhelmed with emergency cases for the foreseeable 😢.

@givemeanother glad your lung function tests went well, very reassuring. And glad also that you're having a good week. 20 minute walk is fantastic, especially with no relapse afterwards. Yes I'm worried too... it just seems to be so much more prevalent where I live this time round. I'm still worried having seen the osteopath on Saturday. And I also have an acupuncture appointment tomorrow that I'm stressing about (she's incredibly safe though and I'm more worried about passing something on as she has a high risk family member).

I'm still incrementally improving here, though as ever, maddeningly slow. I'm now up to 2500-3000 steps a day, and also managed 2 hours' work this morning.

Glad to be of help. And I know it looks like Curable is aimed at pain but it definitely helps with lots of other symptoms too. There are lots of people in the community who have no pain but who have been helped massively with other symptoms. It was life changing for me so is worth putting serious effort into.

@fedupofbed ENT is mid Feb although I wouldn’t be surprised if it gets bumped again, what with the current situation. ME wait time for an appointment was until April.
I’m a bit worried as I think dropping things can indicate MS and I just think the GP is going to eye roll and tell me it’s fatigue

Hi everyone , just popping in to say hi. Stress from trying to juggle work and care for a small child has caused me to feel worse than usual (predictably). I also am noticing some stomach discomfort and think it's all the supplements so am reducing down to try and eliminate if there's something particular irritating it. I'm also going to reduce the niacin down to 100mg daily on the advice of the naturopath as she feels it might be irritating.
Have a more flexible day today so I will try and take it easier.
Like others I'm concerned about covid rates. DH has to go out to work in people's homes, and we are trying to get a critical worker school place for DD but I know schools are struggling with numbers.
I'm also fearful about my family's risk as they live in higher risk areas and some are in contact with confirmed positive cases via work.
All in all it adds up to a picture that isn't very conducive to supporting mental health (which of course is closely tied to physical health).

@Peggyslantern thank you so much for posting that link. I've not had time to look at it yet, but even the name of Curable inspires hope.

@TiddleTaddleTat sorry to hear the stress of school closures is showing in your recovery. I completely recognise stress as a big contributor...I was lucky and able to have a very frank conversation with my boss this week about the impact of not reducing workload during this time - ie I'd be off on long term sick leave very quickly! Yet to be seen whether he sticks to this. And I'm trying not to think about how long school closures might be for - makes me very emotional.

My husband is also in the shielded group so we are waiting eagerly for the call for the vaccine. I might brave alcohol again the day that happens!

Hope everyone has a restful weekend planned. I'm trying really hard not to eat chocolate!

Had a strange episode of chest pain last night. Probably should’ve rang 111 but I didn’t and it passed. GP has booked me in for bloods and an ECG though but from other people’s experiences I’m expecting it to be normal. Also awaiting a chest x-ray. Feeling quite fed up, much harder with the children at home and trying to help out with home schooling. I often can’t get dressed until late afternoon as it’s option of schooling or showering but I don’t have the energy for both. Feeling pressured by work to go back also which isn’t helping although not sure if that is in my head.

Hi

I'm wondering if people who are further down the line offer some advice?! I had covid in mid October and wanted some advice on certain lingering symptoms. I am managing long walks and can reach 10000 steps without being in too much pain with my joints which is awesome. My heart rate has mainly settled down but I've got a weird flutter / ruttle when I breathe and my throat either feels super dry or as if there's mucus stuck....I've had my asthma medication changed up to fostair and montelukast and have a follow up review which I need to book. I know in the grand scheme of things the dry throat and flutter are minor but it drives me crackers! So any advice and tips are welcome 🙏

Anyone still has chest / windpipe / breathing issues? I have had this tightness recently, I think it is more around my oesophagusd than chest, but it affects my breathing.