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

@Mysterian I had similar when I started working again - though admittedly from home. It did get easier eventually but was very very slow. Can you do an hour a day every other day, so that you get a rest inbetween? Or modify the type of work you're doing? It's finding some kind of level that's not constantly setting you back.

OH were very good at helping me to pace. When I first started back i felt like I was wading through treacle... I was so slow and felt I was more of a hindrance than a help. I'm now doing 2-3 hours from home a day and I think it's actually helping my recovery - it's giving me a sense of purpose again and making me feel like a 'well' person for short amounts of time. I have a very supportive manager and team, who have been incredibly good at managing my workload so that I'm not under any stress.

hope it's okay to pop on here?

GP has just told me Dd (14) has 'post viral fatigue, possibly from Covid'.
She has never had a positive test but we both felt very rough for about 4 days last easter time. We didn't have a cough / temp (which were main symptoms at time) and tests not easily available then. We've both been left with a sore / tight chest and tiredness.
Mine is complicated by being clinically low in B12 and iron anyway (long term issue). But Dd's recent blood tests showed ferrtin levels of only 16 and 'low lympocytes' (GP wouldn't confirm exact results just said to eat more iron rich foods and try an inhaler). Dd is exhausted and school keep sending her home.

Does this sound like it could be long covid please and what can I do to help her (other than give her liquid iron and plenty of rest)?

@52andblue My father was in a hospital about then with other people who developed coughs. He was tested positive. Not a single symptom. Certainly possible you both had it then. Sounds like it might be, or similar.
My doctor told me of a support service at the local hospital I'm going to ask to be referred to. Not sure my doctor is terribly good so would like a second opinion. Maybe check out what's going on for you locally?

@fedupofbed My workplace is good. Management lovely. It's a bit of physical job that I find hard to take easy: Childcare, and I'm a 'crawling on the floor with the babies' type, and it's really hard for me to stop myself. Might ask if there's anything in the way of filing or computer stuff that needs doing.
Stress is a major issue for me right now. Might ask for a sabbatical for a month or something. Great time for light gardening.

@Mysterian - thank you that is helpful to know

52andblue welcome and sorry for your troubles with this. You can always ask your GP receptionist to email you the full test results if you have the energy to do some Googling around this and see if that indicates anything further for them to look for. They can’t refuse to share them.

Quick question for those who have dealt with MCAS/histamine intolerance issues - did these problems creep up on you or did they have a sudden onset?

I’ve been dealing with itchy/burning skin sensation for around 2.5 weeks. I also feel my eyes are itchy/puffy at times. My nutritionist had put me on some heavy duty probiotics and yeast which I had been taking for roughly 4 weeks when this started. I’ve also been taking a homeopathic remedy which has caused intermittent skin issues before but not like this.

I’m eating a diet fairly high in histamines but didn’t have MCAS issues prior to this. I’ve always been more chronic fatigue, PEM and neurological issues.

I’m terrified that the probiotics have triggered an MCAS reaction. I stopped than for a week and there didn’t seem to be much change in my symptoms so restarted a few days ago. I’m now feeling nauseous/lack of appetite and worse than ever. I’ve already lost weight and am frightened to lose more.

I’ve been in touch with the GP but I’m not expecting to get much help that way. I feel quite abandoned by the nutritionist - she said she thinks it’s a detox reaction and has prescribed a different homeopathic remedy. I paid through the nose for an in depth gut profile as it seems I have or am developing auto immune thyroid disease. My gut dysbiosis was top of the scale and the probiotics she prescribed were supposed to be targeted to my gut profile specifically. It said I could have SIBO but she said there was no need to test for that. I’ve since read certain strains can be problematic for SIBO or histamine intolerance and my probiotic has these strains.

I’m so confused and have no idea which way to turn. I’m now feeling worse than ever with GI upset I didn’t have before, extremely thin and scared of what I should or shouldn’t be eating. The constant burning is just the last straw. I don’t have the strength to try and get myself out of this mess.

Bambini that sounds very hard. Given the weight loss I would go straight back to your GP.

@52andblue is this Easter 2020 you mean so she’s been suffering for a year? My DD has also had long covid. She’s struggles so much this year with post viral fatigue. She also has low iron levels. She’s been referred to chronic fatigue but basically the treatment they offer is pacing. The school are working with us on it. There’s also ‘long covid kids’ been set up which is helpful for advice.

Thanks @Fishflakes I’ve put an online consult through this morning so waiting to hear back. I’m honestly starting to worry there’s something more sinister going on with me and my stress/anxiety levels are out of control.

That’s great Bambini
I’m the first to agree that GPs seem baffled by long Covid and don’t have much they can recommend. But they are good at ruling out any other things, which will be important to do and hopefully be reassuring. Good luck with your symptoms and hope that you feel better soon.

Thanks @Fishflakes ♥️

@pubbles123 yes, it's been a year. 1st day back at school today, drove her in and she couldn't get out of the car. Speaking to GP Weds as school will not be sympathetic. She was already on a 50% timetable before, due to ASD and anxiety (as school make almost no accommodations for her). This was the last thing she needed. Thanks for tip about long Covid kids. Is that on here or an NHS thing?

Hi all. I've just found this thread after being on another thread where everyone was very dismissive about Long Covid. I've been ill for just over a year, and it's a bit much when people are being sniffy about it being "just" post-viral fatigue. (It's a lot more than that, alas.)

They shouldn’t say ‘just’ post viral fatigue anyway, as that can turn into ME/CFS and last for years. But yes, I agree with you, I used to hear that from family members as well, before they understood that Long Covid was a real thing.

I’ve been ill since the end of February 2020 and there’s no end in sight sadly.

Sorry to read you are all still suffering with this bloody virus and it's effects. I remember some of you from the original 'my lungs' thread from when I had Covid last March.

Can I ask is anyone else having a burning lung feeling? I had an X-ray a few weeks back that showed 'inflammation' and am still having antibiotics for a combination of sinus and chest infection.
I have to have a blood test now and another X-ray in a few weeks which I'm worried about

Sorry so many people are still suffering. I’m at a total loss tbh! GP was less than useless and essentially said he’s not concerned by my rash/skin burning and to try and OTC anti histamine for a week to see if it helps. Are people taking a specific antihistamine if they have it daily? Sorry I know this is the basics for most people but I haven’t ventured down this path before. He said in terms of my weight my BMI is hovering 18-19 and he wouldn’t be concerned until it was down to 16 (which I hope never happens!) to continue with my nutritional input and see what comes of tests I have in pipeline (brain MRI, thyroid bloods and ultrasound). This was after he initially sent me a text with a prescription for antibiotics for a persistent cough that were meant for someone else

I had a call with my nutritionist this afternoon and she is in over her head. She fails to acknowledge that she put me on a really high strength probiotic and that could have side effects. She is keen to keep throwing more at me, including homeopathic remedies and is at a loss as to the symptoms I’m experiencing. I think at this point I’m doing to stop working with her but I have no clue where to turn from here.

I strongly suspect I have auto immune thyroid disease in development so I’m going to pay to see a private endo again I think. The potential I have long covid is just adding layers of complexity. I’ve come of all my supplements to give my body a break and going to try and relax/de stress as much as possible as I can feel myself spiralling. I think I need to just eat as well as I can and regroup.

I know some people have been working with naturopaths - if anyone has a good one they could recommend that would be much appreciated. I feel like I need someone with knowledge of long Covid as well as thyroid-auto immune issues. I have thought about putting myself on the AIP diet but that won’t necessarily be compatibility with low histamine.

I can’t decide whether to test for SIBO myself or not. I know from the tests I’ve already done with my nutritionist that my gut is massively leaky.

I’m throwing money at this and feel like I’m making myself worse than better! Sorry for the huge essay and thanks to anyone who might have read this far!!

Hi @Bambini83 I'm sorry you're having such a hard time and I completely empathise with your sense that you're throwing money at anything and everything to try and get better. I'm very guilty of this and then get completely overwhelmed by all the different responses/suggestions.

Re the possible MCAS symptoms, I think the GP is right - it's safe to take 2 antihistamines a day and then this will give you an idea. You could use loratadine or cetirizine. You could also try a lower histamine diet for a bit - but don't get too stressed about this, maybe just work on cutting out some of the higher histamine foods and see how it goes?

I have not used this naturopath so can't give a proper testimonial but she did give an excellent video on Long Covid and really seems to know her stuff:

www.naturedoc.co.uk/a-naturopathic-approach-to-long-covid-what-we-know-so-far/

As I already said in a previous post I've now cut back on a lot of my supplements and am more relaxed about my diet. For me, I strongly believe there is a mind body connection and that my autonomic system has been completely buggered by this virus, hence all the odd symptoms in different parts of the body. It's like I'm completely out of homeostasis. Most of my work now is focused on trying to calm things down, and deal with all the trauma I've been through and that my body has experienced. And to somehow take the fear away! This is so hard though, especially as I'm currently back having cardio investigations, as my arrhythmia started going through the roof again a few weeks ago.

I'm getting a lot of comfort from Suzi Bolt's Long Covid yoga Facebook group, which is a very warm and positive forum, and generally doesn't have posts that scare the pants off me. I also find Nicole Sachs' podcasts very inspirational and comforting. I started listening to them after being recommended this one:

open.spotify.com/episode/3ZR230fCDq9ZiGM42hFhVC?si=sDjQORr6TgqwzcV9zxUrcA

I appreciate this is a completely different approach though and not for everyone.

Sending love and healing 💕

Thank you for such a lovely reply @fedupofbed ♥️

It’s so hard to know which way to turn and I agree with you I think the stress relief and calming the system down is so crucial. I know I’ve felt better when I’ve been more focussed on my meditation/mindfulness etc. It’s just so hard when you have another almighty crash with additional symptoms.

I’m going to take a step back on focus on trying to calm the anxiety.

I guess my only concern with low histamine is that I rely on things like avocados, bananas for calorie intake. I’m going to do some more in depth reading at the weekend!

Love and healing to you too

Thank you @Bambini83 , yes it's so hard to know what's best isn't it?

I know low histamine has been a game changer for many (though not me 😬). I actually put on weight when I went on it... though I am the opposite of you as my weight has ballooned since I've got ill. The higher calorie low histamine foods I eat are porridge, seeds, salad with lots of extra virgin olive oil and pink salt instead of dressing, Brazil nuts, macadamias, pistachios and plain crisps!

It’s is @fedupofbed and I think it exacerbates the problem. Just wish there was a magic wand that could fix us all!

I suspect the reason I’m struggling with weight maintenance is my thyroid...I’ve been eating loads of nuts and seeds too as well as beans and pulses but they aren’t something I normally ate loads of. Perhaps my gut doesn’t get on well with them! Who knows!!

@fedupofbed just to echo your recommendation for Suzy Bolt's yoga for long covid recovery. Both the Facebook group and also you tube sessions which I discovered only a couple of weeks ago. Really helps a positive mindset.

I'm a year into long covid now and whilst my symptoms are so much more minor than they were 3-8 months into the journey, I'm still not back to who I was. I find relaxation and minimising stress key now - not easy during school holidays!! Also conscious I need to build up strength which is how I came across the yoga groups - I think I'd have less fatigue if my muscles were stronger as I lost a lot of strength last summer during rapid weight loss in the height of the worst symptoms.

But for those closer to the start of this journey, with the knowledge to rest now I hope your recovery journeys will be shorter. And take some hope that even if some of us are still recovering over a year later, it is a journey of improvement.

For those of us on here who are in peri or menopausal, did anyone find their long Covid symptoms have improved with HRT or other treatments for that?
Just wondering about this. I haven’t explored it with the GP, but some of the symptoms do cross over and as I’m 45 I thought maybe it’s worth looking into. I also feel I might get some more interest from the GP in ruling that out at least, if I ask them about something that they have dealt with many times before.

They will try to do to long covid sufferers what they have already done to ME/CFS sufferers. You need to be aware of this.

twitter.com/GeorgeMonbiot/status/1382258225144336386

Anyone at all with burning lung feeling a year after?

Hi @Fishflakes I had previously been on HRT for a brief time before becoming ill and yes I did try and go back on it to see if it would help. I felt quite sick and dizzy within an hour of putting the patch on though, so came straight back off again. I think it was another poster on this thread who then said there can be a link between oestrogen and histamine production. I can't explain it very well so here is yet another link 😊 (and thank you to the person who originally posted it).

www.larabriden.com/the-curious-link-between-estrogen-and-histamine-intolerance/

I then thought maybe the mini pill would help by just increasing my progesterone but had to come off that too as I was constantly bleeding which was affecting my iron levels. I've just ordered some natural progesterone cream to try (and thanks too to whoever posted about this a while back).

We're all different though and I expect you've already heard of Dr Louise Newson who is a menopause doctor exploring low oestrogen levels and Covid severity. It's a minefield!

@CFSKate thank you for sharing, that is absolutely shocking. It's my hope that there are so many of us long haulers out there now that some money will finally be invested into conditions like ME CFS that have been ignored and under funded for so long.

@mylovelydd I don't have that symptom but sorry you're still going through it 💐