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Long Covid

Not sure if this is the right place to ask (sorry in advance if it's not).

Someone I know (genuinely not me) had Covid over Xmas. Symptoms lasted about a month. They have felt completely better since then (other than lingering lack of sense of smell). Two weeks ago they did a very small bit of MDMA and had a quite late and energetic night. Since then they've been exhausted. Down, grumpy, headaches and massive fatigue in the afternoons. They put it down to a comedown at first but now that it's pushing two weeks they are wondering if it's something to do with Covid.

I guess what I'm asking is has anyone else felt completely better, then had a very late night/done something tiring/partied a bit then got massive fatigue again? Another friend of mine suspects they had Covid this time last year (pre-testing), recovered then got massive fatigue for about a month in November with no obvious trigger. And I also know someone who has ME and on the odd occasions he used to risk a big night out he paid for it for weeks.
 
Miss-Shelf said:
I got referred despite same scenario of no positive test results (similar time scale )
Nice guidelines say go on symptoms even if no +ve test
My long covid clinic experience is not super fast but the referral helped me get more flexible working
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Thanks, I’ll keep that in mind. Chest X-ray is Wednesday so I’ll see if they pick anything up and monitor any changes from the antihistamines.
I’ve felt absolutely wiped the past couple of days for no obvious reason other than delayed reaction to vaccine on Friday but it seems unlikely.
 
Oula said:
Not sure if this is the right place to ask (sorry in advance if it's not).

Someone I know (genuinely not me) had Covid over Xmas. Symptoms lasted about a month. They have felt completely better since then (other than lingering lack of sense of smell). Two weeks ago they did a very small bit of MDMA and had a quite late and energetic night. Since then they've been exhausted. Down, grumpy, headaches and massive fatigue in the afternoons. They put it down to a comedown at first but now that it's pushing two weeks they are wondering if it's something to do with Covid.

I guess what I'm asking is has anyone else felt completely better, then had a very late night/done something tiring/partied a bit then got massive fatigue again? Another friend of mine suspects they had Covid this time last year (pre-testing), recovered then got massive fatigue for about a month in November with no obvious trigger. And I also know someone who has ME and on the odd occasions he used to risk a big night out he paid for it for weeks.
Click to expand...
Yes I have and a couple friends experienced the same (without MDMA)
Extremely common scenario in all the covid groups
 
I'm not too worried the 'long covid is in your head' people are going to win this time because of the sheer number of medical professionals who have it. But where it's damaging is employers/managers who think their staff are faking it to get time off - turned out a friend of mine held views like this before I had a stern word with him. Of course 'psychosomatic' and 'faking it' aren't the same thing, but people do conflate them.
 
Ive finished my steroids...on the whole it was a good experience and i feel some notches better than before, not a cure, but i feel like im down the path that bit further. breathing was much better on steroids and it was a bit depressing to feel that wear off a bit but even now its better than it was before i started taking them

did everyone see this?
www.bbc.co.uk

Covid: Asthma drug 'speeds up recovery at home'

GPs can now prescribe it to treat Covid patients on a case-by-case basis, the NHS has announced.
www.bbc.co.uk

not necessarily relevant here, but interesting still
ive picked up an asthma inhaler after not using one for 15 years or so

vaccine tomorrow, see what that does! There were some anecdotal reports that it can help long covid, but im a bit sceptical on that
 
I have a gp appointment in two weeks, thinking to ask for referral to a long Covid clinic if there is one.
But is it worth it? What do they do? Anyone have experience?

ETA: heres a list of where the clinics are
List of services
  1. Oxford University Hospitals NHS Foundation Trust
  2. Oxford Health NHS Foundation Trust
  3. Royal Berkshire NHS Foundation Trust – Berkshire Long COVID Integrated Service
  4. Buckinghamshire Healthcare NHS Foundation Trust
  5. Virgin Care Services Limited and Frimley Health NHS Foundation Trust
  6. Berkshire Healthcare NHS Foundation Trust
  7. Royal Surrey County Hospital
  8. East Surrey – First Community Health and Care
  9. CSH Surrey and Ashford and St Peter’s Hospital
  10. Surrey Downs Health and Care Partnership
  11. East Sussex Healthcare NHS Trust
  12. Sussex Community NHS Foundation Trust
  13. East Suffolk and North Essex NHS Foundation Trust
  14. Milton Keynes University Hospital NHS Foundation Trust
  15. Cambridge University Hospitals NHS Foundation Trust
  16. Mid and South Essex- Provide Community Interest Company
  17. Hertfordshire Community Service Health Care Trust
  18. Essex Partnership University NHS Foundation Trust
  19. Norfolk Community Health and Care Trust
  20. Liverpool University Foundation Hospital Trust
  21. Manchester Foundation Trust (Manchester Royal Infirmary, Wythenshawe Hospital)
  22. North Care Alliance (Salford Royal Foundation Trust, Royal Oldham Hospital)
  23. North Manchester General
  24. Tameside and Glossop Integrated Trust
  25. Stockport NHS Foundation Trust
  26. Wrightington Wigan and Leigh Foundation Trust
  27. Bolton NHS Foundation Trust
  28. Lancashire and South Cumbria NHS Foundation Trust
  29. North Cumbria Integrated Care Foundation Trust
  30. The Newcastle upon Tyne Foundation Hospitals Trust
  31. Northumbria Healthcare Foundation Trust
  32. County Durham and Darlington Foundation Trust
  33. North Tees and Hartlepool Foundation Trust
  34. South Tees Hospitals Foundation Trust
  35. York Teaching Hospital HS Foundation Trust
  36. Harrogate and District NHS Foundation Trust
  37. North Lincolnshire and Goole NHS Foundation Trust
  38. Hull University Teaching Hospitals NHS Trust
  39. Sheffield Teaching Hospitals Foundation Trust
  40. The Rotherham NHS Foundation Trust
  41. Barnsley Healthcare Federation
  42. Doncaster and Bassetlaw Teaching Hospitals NHS Foundation Trust
  43. Bradford Teaching hospitals NHS Foundation Trust
  44. Leeds Teaching Hospitals NHS Trust
  45. The Mid Yorkshire Hospital NHS Trust
  46. Calderdale and Huddersfield NHS Foundation Trust
  47. University Hospitals Coventry and Warwickshire NHS Trust
  48. Worcestershire Acute Hospitals NHS Trust
  49. Shropshire Community Health Trust
  50. Birmingham Community Healthcare Trust
  51. Dudley Group NHS Foundation Trust
  52. Walsall Healthcare NHS Trust
  53. The Royal Wolverhampton NHS Trust
  54. Northamptonshire Healthcare NHS Foundation Trust, Northampton General Hospital, Kettering General Hospital
  55. University Hospitals Leicester NHS Trust and Provider Company Ltd arm of the Leicester, Leicestershire and Rutland Alliance
  56. Bath, Swindon and Wiltshire – Wiltshire health and care
  57. Bristol, North Somerset and South Gloucestershire – Sirona Care and Health
  58. Gloucestershire Hospitals Foundation Trust
  59. Gloucestershire Health and Care Foundation Trust
  60. University College London Hospital Trust
  61. Homerton University Hospital Foundation Trust (Homerton University Hospital)
  62. Barts Health NHS Trust, (Royal London Hospital and St Bartholomew’s Hospital)
  63. Barking, Havering and Redbridge University Hospitals NHS Trust (King George Hospital)
  64. London North West University Healthcare NHS Trust (Northwick Park Hospital)
  65. Imperial College Healthcare NHS Trust (St Mary’s Hospital)
  66. Chelsea and Westminster Hospital NHS Trust (Chelsea and Westminster Hospital)
  67. Kings Health Partners (Guys and St Thomas NHS Foundation Trust – St Thomas’ Hospital)
  68. Kings Health Partners (Kings College Health Foundation Trust- King’s College Hospital)
  69. St Georges NHS Trust (St. George’s Hospital)
 
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hows everyone doing? any positive signs? I feel like ive gone backwards a bit since my vaccine last week which is annoying
 
Frustrating Ska hope for a lift for you soon.

Partners on a bit of a crash this week as went to see family. I think it's very much one day at a time. The fatigue clinic was alright but pretty much shows we are doing what we should in regards to pacing. (post viral but I'll post here)

We are doing PIP at the moment - if anyone wants a bit of guidence and you're thinking of applying feel free to send me a message.
 
Brainaddict said:
I'm doing well, almost back to normal life now. I get the vaccine today so we'll see how that goes. I wish I could get the pfizer or moderna tbh, a bit nervous about adenovirus vaccines when my body seems to struggle with viruses.
Click to expand...
very glad to hear that :oldthumbsup::oldthumbsup:. i wonder if its not possible to delay and request an alternative vaccine if you think thats helpful. I had a similiar thought, but based on nothing rational
BristolEcho said:
We are doing PIP at the moment - if anyone wants a bit of guidance and you're thinking of applying feel free to send me a message.
Click to expand...
Ah nightmare, I hope they dont fuck you around.

Just got around to joining that facebook group. I asked these 3 questions, if anyone has an answer please post, and if any interesting answesr arise on the group I'll post here:

1. I'd like to read some stories of long covid sufferers who have gotten 100% better and have written about their experience. Please share your story or links. I need some hope to cling to!

2. Are there any statistics yet for average recovery length of long covid cases? I appreciate this cant be that accurate, but curious if an work has been done. I've googled and can't find any.

3. I have a GP appointment coming up and will ask for referral to a long covid clinic. Can anyone who has been to the clinics describe the kind of treatments available. I'm wondering how much they differ from my own self-care.
 
ska invita said:
very glad to hear that :oldthumbsup::oldthumbsup:. i wonder if its not possible to delay and request an alternative vaccine if you think thats helpful. I had a similiar thought, but based on nothing rational
Click to expand...
Yes, my chest has even stopped aching - for the first time in a year. So I'm feeling pretty good. It's been a year but it really feels like I've got to the other side. Keeping my fingers crossed hard for no more relapses. Sorry to hear you're not doing so great. It was up and down for a long time for me and it's always shit when it goes down again.

tbh if I thought I could get my choice of vaccine by delaying a bit I would, but I don't think that's going to happen in the near future (though I wouldn't be surprised if people are given a choice come the autumn when most people are already done - cos it will help to get a few vaccine-hesitant people to take it up. Don't want to wait that long tho).
 
Long covid clinic experience: I was triaged to the croydon one in early December. They then signed me up for the lung function clinic and the fatigue clinic. I have just had the results of the lung function tests. All clear as I was expecting. To be honest, I didn't think I needed the tests and consultation but that's how my local clinic protocol was set up. I got sent a fatigue symptom questionnaire a few weeks ago so that makes me think my appointment with them might be drawing nearer!

What I really want is someone to just believe me and listen to all the symptoms I've had without feeling like they have to do anything about it. I just want to be believed that this incredibly ridiculous set of odd symptoms is not all in my head! It would be a lot cheaper to pay a sympathetic community prescriber or councillor to actively listen to me than fund the specialist lung function tests but that's not how it's been set up
 
Ive just been taken off the long covid waiting list cos they hadnt heard from me since January and I never bothered to do the 40+ page form :rolleyes: they sent me for the fatigue clinic (I kid you not). Oops. Bit annoying to read the letter as my GP encouraged me to get in with them. The main thing that bothers me is feeling like im not being counted for stats/data purposes.

The lady was very nice on the phone but theyre under a lot of pressure with a lot of patients and tbh I just dont feel like doing any online workshops etc or getting help with my work... not working now anyway and ive had to stop my masters. I dont really know what they could do to support or help me.

My advice to anyone else would be def go for it because of the support/help but hey do what I say not what I do. I dont want to tell myself I have CFS/ME or make this part of my 'identity' and Im already getting great psychological support privately. Ive learnt about pacing and keeping track of things the hard way too and the last thing I want to do now is write down my symptoms every day and over focus on long covid stuff. I watch Gez Mendingers vids and thats already enough for me.

Btw I have been doing a lot better as of the past few months and I've been able to go for little walks and to view some flats (trying to move out) too which has been a big confidence booster. Everyone seems so sure of what is making them better etc but the reality is we dont fully know and it's intensely complex stuff, especially as recovery is not a linear process etc.

I havent sorted out claiming benefits as im living with my parents and fixing laptops up for cash currently - but thats the next thing to do. Thanks for the tip on PIP!
 
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Sorry to hear Miss Shelf and glad that you're doing a little bit better Riklet. Hope your next appointment goes well Miss Shelf. We found the fatigue clinic helpful even though she is doing everything she can really.

My girlfriend has found it particularly difficult around her period as she gets PMS really bad. She has been prescribed Sertraline to use around the start of her cycle as they have found it helps some people. Early signs are pretty promising with a reduction in symptoms so that's something!

We're pretty confident as with PIP as we both do it through work but not as sure with this condition if we're hitting the right marks. I'll keep you updated and happy to help anyone here, particularly if she get it as it'll mean we did it along the right lines.
 
Miss-Shelf said:
What I really want is someone to just believe me and listen to all the symptoms I've had without feeling like they have to do anything about it. I just want to be believed that this incredibly ridiculous set of odd symptoms is not all in my head! It would be a lot cheaper to pay a sympathetic community prescriber or councillor to actively listen to me than fund the specialist lung function tests but that's not how it's been set up
Click to expand...
Of course your symptoms are real! We believe you - Im sorry you feel the world doubts you at all. Definitely not in your head - this shit is real.
If its any help post here regularly how you are feeling.

I dont know what I want in the way of help from any potential clinic. I guess I want to be informed if they come up with something clever. Up for some more drugs too
 
I don't really know if I count as having long covid. I definitely have ongoing symptoms and it's 4 months since I had covid now but the symptoms aren't life limiting, just annoying. So I feel bad complaining about them as it seems minor compared to what others are going through.

I'm trying to manage them myself in various ways but this means there's no record that I'm still suffering and I feel there should be because of it being a new disease. How do I flag it up?

BristolEcho said:
My girlfriend has found it particularly difficult around her period as she gets PMS really bad. She has been prescribed Sertraline to use around the start of her cycle as they have found it helps some people. Early signs are pretty promising with a
Click to expand...
This is interesting. My symptoms are so much worse before my period, it's the only time it really interferes with my life. It's how I know my period is coming. My joints start seizing up like the tin man running out of oil and becoming painful. My hands get weak and it starts to hurt to walk.
 
Oula said:
I don't really know if I count as having long covid. I definitely have ongoing symptoms and it's 4 months since I had covid now but the symptoms aren't life limiting, just annoying. So I feel bad complaining about them as it seems minor compared to what others are going through.

I'm trying to manage them myself in various ways but this means there's no record that I'm still suffering and I feel there should be because of it being a new disease. How do I flag it up?


This is interesting. My symptoms are so much worse before my period, it's the only time it really interferes with my life. It's how I know my period is coming. My joints start seizing up like the tin man running out of oil and becoming painful. My hands get weak and it starts to hurt to walk.
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I reckon this is happening on a mass scale....symptoms are not individually significant in themselves so people dont report them...but then they dint get recorded

Yiu could send your gp an email detailing all your symptoms

Theres also a facebook group for people who get post covid cyclical symptoms related to their periods because its happening to a lot of people

It sounds pretty nasty for you even it is not all the time

It will be interesting to see if the reported covid vaccine reactions relating to periods will shed light on the period difficulties emerging after long covid
 
Miss-Shelf said:
Theres also a facebook group for people who get post covid cyclical symptoms related to their periods because its happening to a lot of people
Click to expand...
Do you have a link for this? Or know what it's called?
Miss-Shelf said:
It will be interesting to see if the reported covid vaccine reactions relating to periods will shed light on the period difficulties emerging after long covid
Click to expand...
I haven't heard about this at all
 
I've made a doctor's appointment to have a chat about it.

Also trying to make a counselling appointment with my college service to discuss some of the things relating to it that are getting me down.
 
The AZ vaccine has really knocked me back unfortunately. A week on and I still feel exhausted and a bit hazy :( I've had to go to bed in the afternoon a couple of times, which I haven't had to do since the niacin kicked in last year. I'm just hoping it's temporary.
 
ska invita said:
Of course your symptoms are real! We believe you - Im sorry you feel the world doubts you at all. Definitely not in your head - this shit is real.
Click to expand...

I don't think that this is useful - it doesn't matter whether "long covid" or CFS is due to a physical problem or a psychological maladaptive response - the symptoms as experienced by the patient are "real" to them.

There will be a large group with "long covid" who have a depressive illness or somatization disorder, and another group who have a post-viral physical problem underlying the symptoms. It only really matters which if there is an effective treatment relying on the mechanism. If not, pushing this line (which I know you don't actually intend!) delegitimises the real experiences of those with a problem rooted in the mind rather than the body.

It's still real to the sufferer whether the problem is in the head or the body.
 
zahir said:
After five weeks or so I feel like I'm about back to where I was before I had the jab.
Click to expand...
Oof, glad you got back to baseline, but five weeks is a bit grim. I've got a holiday planned in a couple of weeks because I was pretty much recovered :(
 
kropotkin said:
There will be a large group with "long covid" who have a depressive illness or somatization disorder
Click to expand...
But what evidence do you have for saying this? I'm sure there's a few people who have been tipped over into severe depression etc by getting long covid, but I don't think there's any reason to believe it would be a high number.

You're right that people shouldn't dismiss psychosomatic disorders, but medical professionals have been misunderstanding post-viral fatigue and related conditions for DECADES and they still don't understand the mechanisms, so I don't think anyone is in a position to make the claim you made.
 
kropotkin said:
I don't think that this is useful - it doesn't matter whether "long covid" or CFS is due to a physical problem or a psychological maladaptive response - the symptoms as experienced by the patient are "real" to them.

There will be a large group with "long covid" who have a depressive illness or somatization disorder, and another group who have a post-viral physical problem underlying the symptoms. It only really matters which if there is an effective treatment relying on the mechanism. If not, pushing this line (which I know you don't actually intend!) delegitimises the real experiences of those with a problem rooted in the mind rather than the body.

It's still real to the sufferer whether the problem is in the head or the body.
Click to expand...
Perhaps you misunderstood my post?
Miss Shelf has clearly had experience in which she has felt that her symptoms are in doubt for whatever reason.
There are many experiences I am familiar with of GPs dismissing and doubting patients. I was merely reassuring her that if after more than a year of this shit if it feels real then its real.
From my own experience long covid is a strange feeling that does make you continuously have to check yourself, with each day feeling different somewhat
 
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