COVID long-termers 14 weeks+

[isitorisntit]

Welcome all. I'm sad that many of us are still here but at least we have each other. The other thread is full, hence this new one.

Welcome anyone else who is struggling with a long recovery from COVID. They're a supportive lot, here.

I saw that BBC article, feel mixed about it - dismayed that it is referring to mental health support. Yes, that will be needed, and of course it is crucial, but risks playing into the idea that this is a psychosomatic illness. Really gets my goat that this is offered before any investigations to rule out a physical cause - my GP has been like this with me.
On a positive note I have not had a major relapse (yet!) in the days leading up to my period this month. Last 2 periods I've had a dreadful relapse but this time I'm feeling a little more tired and that's it.
Hopeful that I am moving towards recovery.

@TiddleTaddleTat I don’t think that’s what is meant, I do think this is an extra service as having real physical symptoms for a prolonged time takes its toll on mental health too.

Thanks Millstone and fedup I had missed that point and that’s reassuring. Hopefully it will be useful.

TiddleTaddleTat The mental health support will be for a lot of patients suffering PTSD, as some can remember being told to say 'goodbye' to their families from their hospital bed, whilst the staff held phones to their ears, it was that much a touch & go situation
There will be people that have survived it, but lost partners, parents and children to it also.

I was suffering from random flahbacks in April, just from managing it at home. I think the brain was trying to compute what the hell had happened to me.

@TiddleTaddleTat I know what you mean. Both because it smacks of “it’s in your head” which us ME/CFS have had sooooo many times and also I’ve had other “courses” like 12 week access to a mindfulness exercise online is great but it won’t cure me and may not even help, but once you’ve “had” it, tt’s your lot. CFS treatment is CBT after 6 weeks CBT that’s it, might help some people but it didn’t help me. Which is fine, but the you get the attitude “ well you had all the treatment, what else do you want? “ Er to feel less shit tbh.
It’s great they will be offering long haulers something, at last. I just hope it’s not a tick box panacea.

Yes there will be mental heath support needed for many survivors of covid, whether treated in hospital or not. Just the information on this long term programme so far mentions breathing, mental health support and other support. It's vague so far and doesn't cover many of the issues we're dealing with.
I really hope this programme will include some of the good quality work on rehabilitation and recovery that has come out of organisations like the ME association and physiosforme

this was posted a while ago and I've found very useful www.physiosforme.com/covid-19

I found that resource very helpful as well KitKat except where it gets to the bit in the leaflet if I recall correctly, it says if you cannot work to explore options like Universal Credit. That is not really an option is it, when you work full-time and pay a mortgage with children to look after. It is almost like saying, too bad, there goes your life.
I understand that UC is there to support people when they lose their jobs or have other adverse life circumstances but mentally I am struggling with the idea of not recovering from this. Many of us have not even had basic medical tests and support.

Yesterday and today I fell asleep for an hour in the afternoon (just woken up). All I did today was go to the supermarket (for the first time). I used to be able to do that on top of a day’s work. Not as the only thing and then need to sleep.

I had to go back and count - fifteen weeks and two days since I got this virus.

Sorry that mini-rant was not at you KitKat - it was at the circumstances.

Who has still got breathing issues here?
And anyone who had it for a long time and finally overcome it?

Just wondering if anyone has been experiencing excessive hair loss. Mine is shredding like crazy. After i wash my hair looks like a couple of weeks build up on my hairbrush not to mention whats on the floor or dangling from me. I'm 14 weeks from testing positive. Was googling and one of the causes can be due to illness so was wondering if it could be to do with covid.

@Moodgie I have bad breathing issues still. 14 weeks today. Some days are better than others but the good days are still rubbish.

Other lasting symptoms are awful reflux, pounding heart ( improved a lot lately ), achy back and calves and a blocked nose.

The fatigue had gone and I’m feeling energetic. It’s just this debilitating SOB!

@applesnapple27 my hair falls out in clumps when I’m ill, lucky for me I have a lot of hair that I can afford to shed it. My hairdresser will say “is it 6 months since you were last I’ll? From looking at the length of the regrown hair

applesnapple27 ah, that is interesting as I keep having to unclog hair in the shower which is never normally a problem. DD has long hair and I did not put two and two together that it was related to being ill (we both have been).

@applesnapple27 - several people on the slack forum have been commenting on hair falling out. It can happen apparently after a virus. It can also be triggered by low iron.

Hi to everyone else. I am now 16.5 weeks. I feel like i am starting to recover from yet another relapse last week. Main remaining symptoms are fatigue, brain fog, intermittent chest pains, light-headedness, tingly/burning toes and still some chills, hot face etc. Another new symptom cropped up a few days back of sore finger joints, but thankfully it has reduced.

What do these symptoms sound like?

Sore throat, sneezing, terrible headache that doesn't respond to any pain killers, rash, stiff neck, chills.

@Moodgie me still my only lingering symptoms are chest pain and sob.

@applesnapple27

Have you been lying down a lot more too? The combination of being unwell and resting your head a lot more can make you shed hair.

Hi all, I’m new here and just discovered you today. Bit nervous about posting as I found the Facebook groups quite depressing and I am struggling mentally. I’m 17 weeks since the whole thing started. I recognise the cycling of symptoms and relapses and that’s what I am finding mentally hard. Just as I pick myself up things come crashing down again. I agree with those who say it doesn’t necessarily seem linked to activity and happens regardless. However I have a 6 year old who is very full on and I’m primary caregiver so rest is not hugely possible lately.

I’m torturing myself reading about why it might be happening because I’ve become obsessed with understanding it. My main issue is not knowing if this will get better. Do people get better? Are there examples? I have struggled to find people who say they are back at work and recovered (I saw one on here)

Sorry for the ramble. I can see life as I knew it slipping away.

@HatRack welcome, symptoms can reflect a number of illnesses, we always recommend seeking advice from a dr.
@Criticallythinking welcome, we tend to be around your length of symptoms down to a few weeks less.
Yes there have been recoveries in our previous covid lungs 8 weeks plus (plus) threads and in this thread. Some of us also have MS/CFS so we’ve been through similar “mysterious failure to recover” before and survived. All of us would like to get better though!

@Criticallythinking welcome, sorry you’ve been suffering for so long.

At 17 weeks in hopefully you have had some medical support and tests.

@Moodgie, I still have shortness of breath - I have a respiratory appt next week to start tests.

Hi,
I haven't posted before but have been following with interest. My symptoms started 13 March and without wanting to jinx myself I would say I am 95% recovered.

I've managed some long walks and my 1 year old has been waking 5 times a night for the last 2 weeks. Usually lack of sleep sets me back massively but for the last week or so it hasn't been too bad.
My remaining symptoms are very mild tingling in my toes and some occasional SOB.
The big turning point in my recovery came when I reduced sugar in my diet. I came to the conclusion my remaining issues were linked to inflammation and read on the slack group that sugar can make this worse. I have definitely seen an increase in symptoms when I do have more sugar now. Whether it is that or just the amount of time that has lapsed I'm not sure but I just wanted to share that things do improve eventually.

@MillStone yes I have, I had a clear X-ray and bloods. Initially had low calcium but that fixed itself. I’m now seeing a rheumatologist who is doing more blood tests though has diagnosed post viral syndrome and recommended pain clinic. I already take gabapentin and have been started on an antidepressant.

I had my first symptoms around 4th March but it didn’t get awful until early April so I’m never sure when to count from.

I had a cough up until a couple of weeks ago. My gastric issues cleared up quickly. But I have awful muscle and joint pains, fatigue and the sore throat that others have described. My mood has been a huge issue- like something has taken over my brain!

@Criticallythinking good to hear you are receiving support.

Gabapentin, I was prescribed that too but never took it. It’s an epilepsy drug, isn’t it? But also helps with PVFS too?

Yes the mental health side of this ordeal has been worse than the physical symptoms.