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 Thanks so much I've been on them a while now and I definitely know if I forgot to take one! I've got a weird thing now when I wake up the side of my neck near my pulse hurts all very odd.

Just a quick update had a follow up on my bloods everything is within range slightly low iron. Doctor said to add some multivitamins, carry on with the antihistamines too. I've been for a blood pressure check and have got some at home monitoring for the next two weeks then once everything is back they are looking at referral for help with the symptoms

@Dogatetheleftovers

Did anyone feel really shaky and/or dizzy when doing even simple tasks like make a snack? I’ve had both over recent days.

I had this on my whole left side about a month after getting Covid but only for a week then it stopped. It did scare me a bit as DM had early onset Parkinson's, but thankfully it stopped so I think it was a Covid thing. I'm thinking of taking vitamin B supplements anyway as I read somewhere that can help.

Just checking in, had covid March 2020 highly symtomatic until July and august last year and then back on and off the relapse treadmill since September at a lesser level of severity- less bedbound, more feeling like I have a hangover every day. Now nearly a year on I still get out of breath walking short distances and talking at the same time is very hard. I’m currently having a major relapse of headaches, nausea, tinnitus and pins and needless. Really fed up of it. Working part time anyway due to kids and feel very anxious about keeping up with everything I need to do at work and home. I tested negative on lateral flow and have ordered a postal PCR test kit to just check. I’m fed up of isolating but we’re doing it in case it’s a reinfection. I am wishing everyone the very best who are still struggling with this horrible virus. I feel like it’s just normal now that I feel ill and I really worry about the cognitive side because I can’t retain information normally or recollect short term events a lot of the time. What is presume is oeri meno not helping.

Hi @Fishflakes. We have both been here for such a long time!
I have a similar pattern to you. In September I felt way better and started doing long walks which coincided with going back to work (school) and then getting more and more tired and I stopped any activity altogether. Recurring symptoms were palpitations and fatigue, some chest pressure plus some oesophagus/windpipe sensations.
I went for a long walk today as felt fine and decided I would start walks again. Now feel tight-cheated and feel like can’t breathe as ‘fully’. Plus got these red patches on my thighs that I kept getting in the summer (really red, irregular, then fading in a few hours). Why oh why? Is it because I walked a lot? I’m upset and worried now. So fed up just like you.

Hi everyone! I “like” to come here and check in every now and then. I was also part of the original first thread back in March 2020! This really helped me through my illness, I remember being up in the middle of the night here when I was so ill I couldn’t sleep and reading others who were in the same situation really helped.
I had what I would call moderate plus symptoms for 6 weeks, practically stuck in bed for 3 of them with every symptom under the sun. Would wake up with something new every day.
I then had relapsed every 2-3 weeks for about 3-5 days at a time which would include breathlessness, heart palpitations and pounding that would wake me at night, gastro issues and fatigue. This stopped in September - 6 months after initial infection. And I can happily say that I haven’t had any relapses since! I do think exercise sometimes triggered it so barely did any exercise between September and a few weeks ago but was fine when I did recently!
Also I had another antibody test a few weeks ago and that is still positive. 11 months post infection. I do hope that immunity from catching the virus is “a thing” and that enough research is being done looking into this area!

@findingschools4myboys Great to hear from you and such great news. Same as you, this thread helped me enormously at a time when nothing was known yet about long covid.
There must be some light at the end of the tunnel for all of us I hope.

Hi, sorry for jumping on your thread but I started this thread the other day and I was just wondering if anyone on here has had their vaccination yet and noticed any change in their symptoms?

www.mumsnet.com/Talk/coronavirus/4175645-Getting-the-vaccine-could-help-long-Covid-sufferers

MarcelineMissouri I would like to know this too. I'm very pro-vaccine but scared it might exacerbate my long covid symptoms.

findingschools4myboys that's excellent news .

Hi all.

I was on the original 'burning lungs' thread in March 2020, under a different username. I was ill for several weeks with breathlessness, pleurisy, etc (I am asthmatic) but I actually made a good recovery over the summer and was exercising, swimming, cycling etc. The only thing that seemed wrong was recurrent /chronic UTIs that wouldn't go away all summer and autumn , and I got an ear infection at one point too. Put it down to low immune system.

Had a bad cold in late December /early January. Then in early January I came over all lightheaded and dizzy one day and fainted in the bathroom. I fell and broke my nose (badly deviated septum so can't breathe properly through it). Put it down to a random incident.

However, over the last few weeks I seem to be experiencing a relapse. I've had lightheadedness, chest pains and heart palpitations /pounding heartbeat. My blood pressure seems high too when I measure it at home.

A lot of similarities between my current symptoms and those on this thread, and also my past Covid - though it wasn't tested as it was too early and there weren't enough tests available at that time. So I'm now thinking I have Long Covid.

Thankfully I don't have bad fatigue, but I know I couldn't manage my job if it wasn't working from home at the moment.

I wonder does anyone have any tips for these horrible chest pains/ pounding chest /lightheaded/dizziness symptoms. I'm really hoping it's just a phase and will go away soon.

to all those suffering with longterm symptoms.

Hi everyone. Sorry to those of us who are STILL here after all this time. And as others have said, this thread has been such a source of help at my darkest moments.

I seem to be different from many of you, as I don't have the recurring relapses that are so common, but symptoms have been relatively consistent throughout. I had a mahoosive setback from October to December due to a cold and am now stable again. Sadly I still have extreme fatigue, a high heart rate and am unable to do any activity for more than a few minutes, so pretty much housebound. I'm feeling better in myself now though. I think Sertraline has really helped, and I'm doing lots of meditation and gratitude practices. I've started back my Perrin Technique osteopathy whichever I'm hopeful about too. Anyway sorry waffling again...

@MarcelineMissouri thanks for your post, I'll have a look at your thread. I had my first vaccination on Friday (Oxford AZ). I was super worried about adverse side effects as my symptoms are still quite pronounced. So far though I've had 'typical' side effects - a sore arm, headache and groggy feeling, and it's all very manageable. Early days, but I will post if any other changes over the next week (🤞for good changes!).

Love and healing to everyone.

@Wildswim
I rest and not try and overdo things. My "cure" for many things! Keeps my chest pain at bay. Ditto dizziness, but ever since several bouts of a form of vertigo, that is somewhat of an ongoing problem anyway. I have never got High Blood pressure. In fact I regularly thorughout my life get Low blood pressure. I eat salt when I get low blood pressure, to keep that at bay.

Thanks @fedupofbed, sorry to hear you’re still struggling too. Sorry to hear from so many others still having issues. I did use Spatone for a while last year and it did give me some very slow improvement while I was using it regularly. There was someone on here recently who seemed very knowledgeable about the ferritin but I can’t remember who it was and my brain isn’t working well enough for me to go back through the thread!

@Wildswim I’m one of those who has never really been sure if I’m long covid but I have a crazy number of the symptoms and the relapsing cycle. I had been in a better place and then floored again in January.

Very interested in the Perrin Technique @fedupofbed I looked into it a while ago but there are no practitioners local to me so I’d have to travel (once lockdown eases). Do you find it helps?

@Bambini83 it's a bit too early to tell yet. I had one session early January and then had to stop because Covid cases sky rocketed. So I've just started again. The science/research behind it does seem very credible though. It's supposed to be a good sign if you feel quite grotty for a day or so after each session - and I have done so far which is perversely reassuring 😁.

It's not a quick fix though and my practitioner estimated it would take 12-18 months to recover. It's something you can do alongside other treatments/therapies.
There's also a set of exercises that you do 3 x a day at home.

There are a few positive stories on the Long Covid Facebook groups, and I also got more information from a Perrin Facebook group.

Having a bit of a wobble today with my symptoms mostly the fatigue and joint pain its just really got me down just if I'll ever be fully well. Has anyone been referred to a long covid clinic? How have you found it? Thanks in advance

Thanks @fedupofbed it’s definitely something I’m going to bear in mind!

I had covid back in September and since have been having awful dizziness, lightheaded and pins and needles...any one else had these? Blood tests all
Normal

Hello all...
Just checking in, I know how valuable this thread was for me in the dark days, infected in March 2020.

I am now fine. There are the faintest of niggles, but I am close enough to my normal self.

I take multivitamins with minerals, a probiotic, an HCL and a fish oil tablet every day. I am off the DAO supplement, and only take an Antihistamine when I need. I have dropped the Montalukast to every 2nd day, but actually feel better off it. The only constant med I take is famotidine and an aspirin.

Top tip - for the weird burnt tongue feeling, suck some iglu sugar free medicated pastilles, what a difference! My tongue looks so much better. I thought this was thrush but now think it was just dry mouth.

Sending love to everyone. I'll maybe bow out now, there's not much value I can add. Take care my Covid friends, take heart from this message, you will heal, and thank you for all your support. Xxxxxxxx

@AndsLee I am so very pleased for you. You have persevered and shared so much along your journey and provided inspiration to me and I'm sure many more. It felt like you were never prepared to accept not getting better!

I too am feeling better. 11.5 months since first being sick. I don't think I'm as recovered as you quite yet but I feel more energised every week, chest pain is gone as are aches and tingles. Key medicines for me are also the HCL and digestive enzymes to improve gut function, plus quercetin as natural antihistamine and b vitamins. I have also been on famotidine for 3 months which I think is responsible for the chest pain finally going. Last time I had to clutch a hot water bottle all day long was mid-Dec  and I've even been able to give up the nighttime gaviscon.

After following the lowest histamine diet I could manage for one month, I can now mostly eat what I want, but try to include lots of fresh veg and fruit. I completely avoid coffee and only have alcohol at weekends - one drink at most.

I was so despondent in November after another relapse but I now really think most people will get there.

I haven't yet braved exercise again...that feels too soon having been the trigger for my worst long covid phase and extensive weight loss in the Summer...are you able to exercise @AndsLee?

I have no idea why that is all in bold, sorry!

@givemeanother
Walking is fine, haven't really tried much else except Zumba and Tai Chi. Seems to be no bother though. I am glad you are doing better. Another 6 months we'll be right as rain... Xxx

@RunawayBride2

I had covid back in September and since have been having awful dizziness, lightheaded and pins and needles...any one else had these? Blood tests all Normal

Yes I've had dizziness and lightheadedness. Strange since it's only since my 'relapse' I've had this, and not during the original Covid.

I'm liking the positivity of @Andslee. We will get better! Our bodies have a great self-healing capacity.

I think mild exercise is key and as my username indicates, cold water swimming has been a big part of my recovery process.

Ah guys
Only 6 weeks in and I'm still off sick

Were you off for long?
Can at least walk for ten mins now
Other than that could just sleep most of the day 😢😢😢😢

I had a setback the last month when my DD1 (11) developed a viral illness (not Covid) and had a sore throat for over a week. I caught it not surprisingly and my cough has got a lot worse again and I have a very tight chest as well. I’m constantly wheezy and breathless, particularly when I try and do anything. I have yet another chest X-ray booked for 10th March. I’m not that optimistic that this will give me any answers.

On a positive note, I have my first Covid jab on Saturday. I qualify because I’m listed as DD1’s carer; she has SEN so we receive DLA and carer’s allowance for her.

Hi all,

Nice to see some ‘Old timers’ back on this thread, as am I. Coming up to my one year anniversary tomorrow, not one I wanted to be having and can’t believe it’s been a year!
@AndsLee So glad to hear you’re almost completely better and a couple of others, it gives hope.
I’m still not completely better, still dizzy in the mornings (takes an hour or two to come round) phases of being foggy headed, aching, diarrhoea, some chest and heart area discomfort etc. They come in cycles, as they always have done and there are fines I’m almost 100%, possibly a few days a month, I think is mainly hormone related as had a very bad time last period with all sorts of mast cell activation type symptoms. Haven’t had a proper period this month, so we’ll see.
I take Vit D, C selinium, zinc, magnesium, anti histamines. I stopped with the Niacin as I found I was having strange reactions to it, it ramped up my system and feels as though it released more histamine into my body 🤷🏻‍♀️
Hoping this will get better, on bad days I feel like it’s something I’ll always have, on good days I feel it will go.
I’m worried to have the vaccine but also praying 🙏 it will help us all. I’m in another country where the vaccine rollout is happening, but nowhere near as quickly as the U.K., so I hope they get a move on a bit!
This group has always been a big help to me and I thank everyone for that 💐 I had noticed less were posting and wasn’t sure if it was a sign many were much better or if we’d just sort of learnt to deal with it.