Other Covid ‘long haulers’ support thread

[Teasel]

Hi @barefoot I wanted to ask you about the post covid symptoms you've had, whether you've gotten any help from GP or the like for it?

I've had a bout or two of feeling very unwell indeed. Ill talk yo GP Monday or as soon as they'll talk to me, but wondered about your experience.

How are you now?

 

[barefoot]

Hi @Teasel Sorry to hear you’ve been feeling really unwell.

My post-Covid symptoms have largely been fatigue and respiratory-related. I had three lung infections between May and August having never had one before!

Still having to really pace myself. Any exertion - physical, mental, cognitive, emotional - is just exhausting. So, now I’m feeling quite a lot better, I still have to make sure I’m not over-doing it, otherwise I will pay!

GP suspects I may have some damage to my right lung at least - I still get quite a lot of achey pain there though it’s much less intense than it was a few months back, when it constantly felt like someone had taken a hammer to my rib cage and lungs.

GP referred me to the triage respiratory department at the local hospital back in August as I was still getting very short of breath and was wheezing and ‘crackling’ a lot. GP was hoping they’d do a CT scan to see if there was any damage or anything else going on in my lungs. But I haven’t heard anything from them. I guess respiratory departments are just inundated.

My GP is really nice and has been supportive in that she has taken me seriously - I know lots of long Covid patients have had very unsympathetic GPs who have written them off as ‘just having anxiety’ so it’s good that mine believes I am actually experiencing long Covid/post-Covid symptoms. But I don’t think she really knows what to do with me!

Long/post-Covid symptoms can really vary though. Fatigue and respiratory seem common. Heart things. Neurological problems. Hormonal impacts. Gastric issues. It’s a pretty long list.

And it also looks like it’s possible to have Covid twice. Is it possible you have caught it again?

What sorts of things have been going on for you in these recent bouts of illness?

Wishing you better and hope you have a helpful GP.

ETA: Long/post Covid treatment will likely depend on a) whether your GP is on it with long Covid and b) where you live. There are supposed to be long Covid clinics popping up around the country but my GP doesn’t know of one near us - which I find a bit surprising. I also know some people who have got referrals to M.E. Clinics. And there are various trials/research groups that may do some tests and monitor you if you sign up with them too.

Don’t know whether you are on Facebook. If you are, you could join the Positive Path of Wellness (Long Covid UK Group) Lots of members showing the range of symptoms/experiences. And sharing treatments/tips. And seeking/offering support. Just to flag though, it can be intense as there’s a lot on there about people suffering and not getting help etc - even though it’s meant to have quite a positive focus. So, a bit like here really - it can be really helpful but, if you’re not in a great headspace, it could be a bit...much!

 

[barefoot]

How did you get on with your GP @Teasel ?

 

[Teasel]

Sorry for the late reply!

I've been given a form for some blood tests, he did say what they are for though I only registered inflammation I think it was.

I went through the 111 online thing before contacting the GP, and their advice was to contact GP. They don't think I've covid again nor do I.

Symptoms I'm experiencing most are fatigue and muscle ache, particularly after exercise. Getting out of puff very easily. Occasionally wheezing when at rest when it's at it's worst.

Feeling hot & cold (no temperature), very occasiinally mild cough, headaches,

Just these last few days - constant hunger. Even straight after a meal. Has been driving me mad. Not as bad today as it was.

After having covid symptoms March to May, I thought I was better. But had the odd patch of feeling not quite right, unwell again but not the same symptoms as covid. Though some similarities like the aches and fatigue and out of puff.

Looking back I can see it as waves of feeling unwell. None if them were that serious though till a few weeks ago. Spent a week in bed absolutely exhausted. Just walking across the room would exhaust me. Could only go up the street a little if going for a walk.

Since then I can only walk 5 to 10 min max at any kind of normal pace before hitting a wall. If I push past that I'll end up in bed body hurting quite badly and worn out.

I keep nearly losing this post so I'll post it now

 

[Teasel]

Been fairly unwell again the last few days, though not nearly as bad as the other week..

I've been reading up a little bit on long covid, reading about the anti inflammatory diet. Have you found any such helpful info?

Sounds like you've had thos worse than me, at least until the other week. Do you think you are getting better?

 

[barefoot]

@Teasel - sounds very much like waves of being unwell, as you say. That seems to be how it’s been for many people...a pattern of being unwell, improving for a while, then relapsing...then improving again, then....!

What you’re describing does sound very much like it could be Long Covid to me. Or perhaps a generic post-viral fatigue thing.

To be honest, I have ended up getting quite overwhelmed with all the possible tips that people have shared in the Facebook group I’m in. There doesn’t, of course, seem to be any one thing that has consistently helped everyone, so it’s all very hot and miss.

I know some people on there reported some success with anti inflammatory diets. Others with low histamine diets. Others swear by completely giving up sugar. And plenty of others tried all these sorts of things and say none of it helped at all.

I have been taking Naproxen every day for the past three months from my GP. More for specific rib/lung pain rather than general inflammation. I’ve also spent a small fortune on turmeric supplements since early summer, to help reduce inflammation. I don’t feel like they’ve really made any difference. But, who knows, perhaps I would have felt worse if I hadn’t taken them?! Don’t think I’m going to buy more when I’m finished this lot...will see what happens then!

A different sort of thing, but I’ve seen that some people have had success with The Perrin Technique. It’s a branch of osteopathy, I think, which has been used quite a lot as a treatment for M.E./chronic fatigue. And it looks like it transfers quite well to Long Covid symptoms. I’d probably have tried that but don’t have a Perrin practitioner anywhere near me.

Yes, I am definitely improving. And I haven’t had a significant relapse where I then felt really unwell again for a few weeks since late summer. But still living with fatigue and brain fog and a constantly aching right rib and constantly being mindful of energy reserves and not overdoing things is just quite wearing. And not very enjoyable, interesting or inspiring!

Hope you get some answers and that you have a decent weekend.

 

[barefoot]

Feeling very unwell again. My fourth lung infection of the year. Covid: the gift that keeps on giving.

@Teasel - how are you doing now?

 

[Teasel]

Really sorry to hear @barefoot

I've been ok, slowly been increasing ability to walk more than up the street a bit. Is best if I start slowly, and continue slowly. Managed a walk all around my park a few days back.

Had blood test done and results have gone to GP, I'm to make a routine phone appointment to discuss results which is likely to be a few weeks away. But on the plus side that means the results don't show anything that needs urgent attention.

Have your doctors said anything more to you about treatment or anything?

Wellest wishes, and a big hug to boot x

 

[barefoot]

Sounds like you’re making progress, which is great to hear. And yes, I guess no news is good news on the blood test front.

The hospital half an hour away is now running a multidisciplinary Long Covid service so my GP has referred me to that. Will wait and see...!

Glad you’re doing ok. With a bit of rest, this relapse I’m currently having will pass.

 

[barefoot]

Wondering how you’re feeling now @Teasel - are you still struggling with Long Covid/having relapses?

I was accepted by the Long Covid service nearest me and am going for lung function tests and n a couple of weeks, as a starting point.

Not sure where you are but if you’re not still fully recovered, it may be worth checking out Long Covid clinics. More are supposed to be opening in the next couple of months so, even if there’s not one near you right now, one might be on its way. Just needs GP to refer. You don’t need to have had a positive Covid test or to have been hospitalised with Covid at any point.

Anyway - hope you are feeling on the up!

 

[Teasel]

Hey @barefoot :)

Still having relapses and currently can walk up to 5 minutes but feel dreadful after.

I'd really love to hear how you get on with the clinic, thank you for letting me know.

I finally get yo speak yo a GP tomorrow about my blood test results. I'm not expecting to be believed but we shall see what happens and I'll push for a second opinion if necessary.

How are you doing health wise?

 

[barefoot]

Ah, sorry that you’re not feeling much better. Gosh, it’s a slog, isn’t it?!

I’m still getting over my lung infection. Infection itself has shifted but it triggered a big Covid relapse, which has really knocked me for six. Trying to have a restful, restorative January...

I’ll keep you posted re the clinic. Hope you get on ok with GP tomorrow and that they properly hear you, take you seriously and try to point you to something useful. I feel lucky in that my GP has been kind and validating from the get go - but I still had to tell her about the nearby Long Covid service as she wasn’t aware of it!

Hope you can rest up and take care,