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

@longshot @LetsBeSensible @Lightsabre @Moodgie @Thethreeamigos @fedupofbed @Crayfishforyou @Norugratsatall @Chocolateycheesecake

Glad to hear that you're all more or less recovered - bar some lingering issues. I'm doing grand too, although I still have to take Omeprazole daily otherwise I pay for it. I have piled weight on - so working on that just now... However... there is something I really want to share with you...

Do you remember way back I kept banging on that my symptoms were related to my monthly cycle - or lack of since I caught the virus? Well...

I was refused a hormone imbalance test about 18 months ago on account of me being "too young". I subsequently found an article in the BMJ about links between LC and Hormone Imbalances, printed it out, and went back to my GP to demand a hormone imbalance test. Now, prior to Covid (caught in March 2020), I was regular as clockwork. This year, I have had 3 periods in total. I received the results of my 2nd test about a month and a half ago (I think my GP had a 2nd done becuase he wanted to be sure). I am now not just in perimenopause - I am full blown. I'm now trying out HRT treatments (which I think may have helped a year ago, but I am past the worst now) to see if they make a difference, and it definitely does assist with some of the lingering symptoms - but makes others worse. Trial and error for now...

I really wanted to share this with you folks, if there are still lingering issues. Don't take no for an answer from your GPs, get a hormone test... :) xxx

Lovely to hear from you all! This was the only place I was able to find any form of support. We went through hell - pioneers, someone called us. But we made it... Thank you all. xxxx

@AndsLee thank you so much for sharing your experiences around the menstrual cycle - very helpful. I had terrible periods for 3 months following covid and was bed bound each month but luckily the period symptoms have now faded though still have other lingering symptoms.

I am still dealing with health anxiety following a bad covid experience in March this year and just wanted to know if anyone caught covid again (twice or more) and were the symptoms as bad and strong as the first time round? Really scared of catching it again as ended up in A&E three times due to racing heart and shortness of breath and have two little children to look after. Thank you

@Boda2021 It was my first bout of covid that triggered long covid. I’ve since had it a further 2 or maybe 3 times and each time was mild with no on-going symptoms. I know others who have suffered with long covid but had no problems with second or subsequent infections.

I got long covid after my first bout in March. had it a second time 3 weeks ago with fairly mild symptoms for a few days followed by a week of 'bad long covid days'. After which, while it didn't help, it doesn't seem to have made the long covid worse.

Anyone found that Prednisolone helped with symptoms?

I had a course back in May before I was diagnosed with LC and they did help for a few weeks but then the breathlessness came back.

I do think things are improving, even though it's happening VERY slowly so I'm wondering whether another course may help now.

I'm desperate

Just found this thread. I'm entering my 7th week. Fatigue still there especially after any activity/exercise; aching tingly leg muscles and brain fog. I'm having word finding, memory and cognitive processing difficulties. Yesterday I said 'she'd spite her nose to cut off her face'! Wtf! 😂

Haven't returned to work yet. Am worried about it, especially with the residual symptoms I'm experiencing. I'm in Education and need to mentally juggle, multi-task and speak articulately about a subject!

Appetite has returned but only about 40% taste and about 60% smell. Insomnia hasn't been so bad until tonight (hence very early morning posting). I hate the tiredness. I'm someone who used to climb up mountains :(

dbkgroup.org/longcovid/

just found this on Twitter. I thought I would share if anyone is interested

forums.phoenixrising.me/threads/long-covid-in-mexico-isolation-and-disbelief.88895/

In a nutshell, microclots maybe to blame. Traditional anti clotting drugs don’t work very well. Maybe broken down by enzymes. Eat lots of pineapple, look into nattokinase.

Thank you for posting this. I have LC (UK) and waiting for a clinic appointment but at least it's acknowledged here. Am hopeful that a solution to LC will also help the ME/CFS community as lots of overlap. X

Any longhaulers felt significantly worse since their autumn booster? I can barely function after feeling so well for so long. Not sure where to turn for help. Booster was two weeks ago.

@Norugratsatall Not the Long Covid, but the reaction to the jab was the worst I've had. Had the flu-like symptoms for 2 days afterwards. Brain fog and aching all over.

I am now 7 weeks post first positive test and 5 weeks clear.
I’m still not really functioning, the fatigue is terrible, I can only really do one household chore per day and then I’m done, the following day can also be a write off.
Never ending dizziness, but not like vertigo more of a light headed wooziness that’s similar to low blood sugar or pressure ( both are normal). Brain fog, memory, processing, concentration is terrible. Heart palpitations and occasional chest pain.
Even if I could get to work, I couldn’t do my job.
I have just had full blood tests done. The results are back a Gp has filled in my medical record ( I have systemonline access) it has been entered there are quite a few which show abnormal, but to be expected. No further action!
After some Googling the abnormalities are basically blood serums still contains virus.
Would it not be ethical for the Gp to ring me to discuss? I’m pretty annoyed to be honest.
So I am going to have to ring them and try to find a medical professional to explain why I have abnormal bloods with no action.

Googling the abnormalities are basically blood serums still contains virus.

What specifically are the abnormal test results @Furcoatandnoknickerz ?

I completely get why you want to speak to a GP about abnormal results - and they should've contacted you - but I'm not sure how you've come to that conclusion unless they did a COVID test?

And in that case, I think second infection would be far more likely than a chronic SARS-COV-2 infection, unless you are severely immunocompromised.

@saltedcaramel1

I had full bloods carried out. Many results are normal.
I did 12 positive Covid tests when I had Covid! The results are posted within my medical record! As are everyone’s who records their test on the nhs.gov site!

The results that are abnormal levels show a few different reasons including immunodeficiency (which I’m not ) blood cancers ( I’m sure they would E in touch!) and Viral infection which I had . I do not have a secondary infection. Also, high levels of antibodies.
Copied and pasted : Urea and electrolytes;Bone profile;Liver function tests;Serum C reactive protein level;Full blood count;Serum lipid levels Report, Abnormal,
Unless you’re a medical professional I don’t think the above will mean much to you. Are you a GP / Nurse ?

I really don’t get what your beef is.

@Furcoatandnoknickerz I don't have any beef!

Apologies if my message came across like that - I generally didn't mean it that way - I'm just still confused as to what blood tests a GP would order for LC would show that "from googling the abnormalities are basically blood serums still contains virus"?

I say this as someone with a partner who has LC, so genuinely asking with interest, not to try and be rude.

As I said in my PP I completely get why you're annoyed and your GP should have contacted you about abnormal results. No I'm not a doctor or a nurse but do work a a research scientist so have a little bit of insight though def not an expert.

oops for the avoidance of any doubt - the above post is me! NCed for a relationship query :)

@saltedcaramel1 I painstakingly googled many scientific pages with each test result and the levels, as I said, as a matter of deduction the blood levels are showing virus is still in my system. I was a HCA so I have an understanding of what is detected.
Which I am pleased in a way, as it shows I’m haven’t got any kind of leukaemia. However, as I’m still ill with so many symptoms it looks like I could be in for LC which won’t be diagnosed until 12 weeks.

So I’m in that limbo stage at the moment.

Have rang GPs, I unfortunately got the unhelpful receptionist, who wants me to ring at 8am, tried to explain that as I’m feeling at the moment that will be pretty much impossible. So, get this , I have a nurse practitioner ringing me to discuss bloods and ongoing symptoms in …….2 weeks! Unbelievable! 🤬

Dr Claire Taylor on Twitter is worth following.

Hello All

I had covid end of Aug for the 3rd time (came back from holiday in Wales with it)

Initially, was just a very bad cold and exacerbation of asthma symptoms.

I did see GP in early stages as I was still feeling bad after 3-4 weeks and he listened to heart and lungs and said all clear and just rest was needed and he signed me off work - Am currently signed off work till next week but am struggling with fatigue and awful headaches mostly.

I find I am worried to do anything - we went bowling a couple of weeks ago as a reward for DC - out 2 hours, came home and needed a nap as exhausted and pretty much slept for 21 hours. But then conversely I can lie awake for hours, so tired I want to cry and sleep does not come. I am not the fittest person ever but used to love long walks, the holiday I came back from in Aug with Covid we did a 5-6 hour walk up and down hills (and it is the last time I felt normal) and now a ten minute walk I am breathless and have to ask my nearly 70 year old Mam to slow down for me.

I take Sertraline anyway for anxiety and depression for last cpl years and feel like I'm on a downward slide but I'm just so exhausted. Brain fog as some have described on here - I just forget what I was saying mid sentence or struggle to find a word of something I can be looking at.

Not sure if this is related but at night I keep getting bad pins and needles in my right thigh, another things which keeps me awake.

Occasional Sore throat, earache, and stich like pain in ribs, occasional blurry vision but mostly when tired so putting it down to that - but not sure how much of this is me being hyper aware of every little thing.

I'm anxious being off work but more anxious at the thought of going back - worried what people might be thinking, I don't think my husband realises just how bloody exhausted I am as I look fine - so feel like I have to push myself so im not seen as "lazy" then make myself feel worse.

@FancyFlapjack Wow you have pretty much described my life now ! I’m eight weeks down the line.
I don’t go to work anymore, as I wouldn’t get much further than getting ready, never mind driving or managing a days work. The fatigue hits me after a short time of doing a light household chore, or a shower.
I have to manage everything on a day to day basis, I’m reluctant to make any plans.
Like you, I used to go hillwalking in Snowdonia for hours, can’t see that happening again.
I am tired and sleepy all day and come the night lay in bed for hours waiting for sleep to come. Hence on MN at 2am!

Then, I have headaches, poor concentration and dizziness, the dizziness is weird, it’s not like vertigo it feels more like the lightheadedness of having too much to drink and I’m also a little unsteady. I haven’t driven since before I had Covid. I mention this to GPs they seem to gloss over it.

I’ve started doing crosswords and word search to exercise my brain, I do think they have helped a little!

I’m also asthmatic but no chest X-ray as don’t have an infection! Just coughing and wheezing!

Terrible tinnitus and a loud noise will hurt my ears.

My DH has been fantastic, doing a days work and cooking and the kitchen. I feel so bad as we used to share all the chores.
I have been signed off work until next year, I can’t see me going back as my team supervisor has been a total cow. Before I went off she had been vile to me for some weeks, she knows it, and actually thought I was making Covid up because I didn’t want to go to work because of her!
I messaged her that I had been signed off and enclosed the certificate, she has completely ignored me. Very Professional!

@FancyFlapjack @Furcoatandnoknickerz I'm sorry you're both going through this. It is really tough.

I had long covid, but have now recovered. It was very confusing how I couldn't do anything, but also couldn't sleep. I know it's hard but you have to rest. Something I heard that helped me was that if you rest when you're not tired, that's when healing happens. In the beginning that'll mean doing almost nothing (skip the daily showers).

I found Suzy Bolt's long covid Facebook group a really supportive space.

Hang in there. I was ill for just over a year and still get little relapses.
Resting when not tired is the best advice. You need to calm your central nervous system right down, don’t overload it. Stick to doing quiet things; solitaire, sudoku etc.
Do 50% of what you feel you can cope with. Avoid caffeine, sugar and keep hydrated.
It does get better but it takes a long time, you can’t rush it or power through.

t.co/I6jT1uXgoW

Recent article if anyone is interested

You're not alone. I'm on week 21. Previously very fit and active. No lung issues but headpain, ear issues, tingly legs, post extensional malaise. Not working and limited activity at home. Waiting for LC clinic appointment. Agree with doing 50% of what you can and not pushing it - frustrating but it works. Liquid melatonin is good for sleep. Have found low histamine diet helps plus no alcohol, sugar limited carbohydrates and dairy. Meditation is good. Anything that pushes your body back into para sympathetic mode basically X