Long Covid>>>lupus?🤔: Long Covid patients are not... - LUPUS UK

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Long Covid>>>lupus?🤔

Sue_petal
Sue_petal

Long Covid patients are not believed!

Keep going medics...you might consider lupus?🤔

bbc.co.uk/news/health-54540544

35 Replies
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Hi,

Thanks for posting but here’s another relevant link.

“My fatigue was nothing like I experienced before...”:

bbc.co.uk/news/stories-5410...

“Gaslighting” lupus patients is a frequent experience from most doctors but will these patients have a better chance of being believed? No doubt there will be more people affected with hopefully more research, more spin-offs and more connections made to AI conditions🤔

Regards to all

Have a read of barnclowns post about a paper published regarding covid and lupus connection

Hi,

Yes, I have.

Wendy39 has also made some highly perceptive comments about the constant harmful “gaslighting” lupus sufferers have to go through.

Thanks.

Regards

👍 x

whaleroad
whaleroad in reply to Sue_petal

So many with autoimmune conditions have experienced gaslighting. I think it's also true of any condition that primarily or exclusively affects women.

Today eekt added some Good Stuff @ the end of that discussion, have you seen it?

healthunlocked.com/lupusuk/...

+ here’s more official U.K. info:

evidence.nihr.ac.uk/themedr...

I'm at the hospital for lung tests but I will later 😘 x

👍Hope all goes OK 🍀❤️🍀❤️

They are suffering psychologically too. awww I've had long term health problems since the age of 25 and a few years ago asked if there was any psycho help for me, the psychiatrist said I just needed to breathe properly and the fatigue and pain would all go away. perhaps they should all try that.

Sue_petal
Sue_petal in reply to suzannah16

Hi,

Hope you’re feeling good today?

One wonders what would happen if the psychiatrist who told you to “breathe properly and the fatigue and pain would all go away...” got long COVID himself?

All in the mind? Really? A total lack of understanding and empathy.😢🤔

This long Covid syndrome is bound to escalate and if there’s more research and funding for post viral fatigue, lupus and other AI diseases? It can only be for the better.

Xx

suzannah16
suzannah16 in reply to Sue_petal

we can only hope. I'm not bad today thank you. had the flu jab yesterday so waiting to see if anything happens :)

eekt
eekt in reply to suzannah16

My flu jab had no ill effects, hope yours has gone swimmingly xxx

suzannah16
suzannah16 in reply to eekt

mine too, not even a bruise.

eekt
eekt in reply to Sue_petal

At the very, very least, in the short term an awful lot more people will know what 'fatigue' is ! With my GP amongst them ! xxx

eekt
eekt in reply to suzannah16

The trick is to keep breathing....even when you feel like suffocating a doc ! xxx

suzannah16
suzannah16 in reply to eekt

some need to feel what we feel in order to understand better

Ive had breathing issues since a chest infection lead to pleurisy which inflamed my heart for a year.i was told I had dysfunctional breathing. now since being diagnosed with lupus its suspected that's the culprit.hopefully all this will lead to drs being less narrow minded

👍 yes: heard this on BBC 4 this morning...THANKS for the link ‼️ Am adding it into my post now 🍀❤️🍀 Coco

Barnclown
Barnclown in reply to Barnclown

PS at the bottom of your article, suepetal, there’s also a link to this fascinating BBC coverage of Long COVID:

bbc.co.uk/news/health-54296223

It begins:

For most people, Covid-19 is a brief and mild disease but some are left struggling with symptoms including lasting fatigue, persistent pain and breathlessness for months.

The condition known as "long Covid" is having a debilitating effect on people's lives, and stories of being left exhausted after even a short walk are now common.

So far, the focus has been on saving lives during the pandemic, but there is now a growing recognition that people are facing long-term consequences of a Covid infection.

Yet even basic questions - such as why people get long Covid or whether everyone will fully recover - are riddled with uncertainty.

Hi Sue_petal, it's amazing Drs know these patients have been seriously ill but don't believe their symptoms. I have struggled to get Drs to believe I have so many problems and some have no interest in what's happened to me in the past. Maybe this is why it takes medicine years to progress and find treatment for things🤔

Thanks for this Sue! I sent the NIHR links to Cambridge Uni research (funded by Lupus UK :) ) on the subject of symptoms not being believed and the impact on patients:

- Medically explained symptoms: a mixed methods study of diagnostic,

symptom and support experiences of patients with lupus and related

systemic autoimmune diseases;

(academic.oup.com/rheumap/ar...)

- Is it me? The impact of patient–physician interactions on lupus

patients’ psychological well-being, cognition and health-care-seeking

behaviour

(academic.oup.com/rheumap/ar...)

A third paper from the team, ' ‘But you don’t look sick’:

A qualitative analysis of the LUPUS UK online forum' is about to be

published in Rheumatology International.

Well, the NIHR did ask for thoughts on their report! :) xxx

Many long haulers have been diagnosed with lupus or as called Covid lupus. One lady claimed she had cured lupus so felt my hackles rise. Have much sympathy to plight of long haulers and the treatment many have received as they like many of us have been declared mad or over anxious re symptoms. I have long Covid so recognise the challenges but statements like I cured my lupus just undermine those of us with lupus. Glad her alternative medicines relieved her symptoms tho.

Sue_petal
Sue_petal in reply to Hamptons

Hi Hamptons,

Thanks for responding. The term “Covid lupus” 😢 is not only a distraction, dangerous, wrong, confusing but a also a myth. Lupus is NOT a coronavirus infection. It is an inflammatory AI disease with multiple causes and medics have not as yet pinpointed a single cause.

LONG COVID is being increasingly recognised by the medics as a complication of Covid infection.

It’s symptomatology is complex and resembles lupus and other AI DISEASES in many ways.

The term “Covid Lupus” should not be promoted and used! It is an ignorant term and a disservice to lupus sufferers..

Lupus sufferers are not infectious!

Lupus is not caused by the Covid-19 virus!

We have to remind people continually!!!

Regards and 🥰to all lupus sufferers.

We all here need to keep punching.

Hope others here will agree? Barnclown ? eekt ?

Xx

Hamptons
Hamptons in reply to Sue_petal

Yes I agree but sadly term is used frequently on the long haul message boards. Frustrated me immensely as while they are suffering their symptoms are unlikely to be life long.

Do think their experiences will move AI knowledge forward quickly due to the overlaps. Lucky me I get to go on both journeys.

As I have said in a previous post the long haulers are also highlighting the lack of financial support and overloaded support services.

It may help us in long term.

Sue_petal
Sue_petal in reply to Hamptons

Yes, positives and negatives though!

AI and lupus research and funding may well benefit in the future eg see @Newby12 and other posts above.

At the moment confusions need to be ironed out!

Who knows?

Ickybicky
Ickybicky in reply to Sue_petal

Yes, I agree.

The term, Long COVID is for a very new phenomenon and complications of Covid-19 infection only known about a few months ago and being increasingly reported by recovering patients, doctors, scientists, media etc...

It is a very new virus that continues to baffle people🤔.

Lupus is hard enough to understand and explain.

Covid-19 is also difficult to understand and treat!

“Covid lupus” would cause even more bafflement and confusion. The term Long Covid seems to be increasingly used and accepted. But Covid lupus?🤔

We should not put that in the mix but it would be reasonable to suggest that as @Muff20 says it’s a form of “post viral syndrome” that still needs more research.

Sue_petal
Sue_petal in reply to Ickybicky

Long covid:

sciencedirect.com/science/a......

Hamptons
Hamptons in reply to Ickybicky

It is referred to by long haulers on their Facebook sites presume that is what their rheumatologist are using. Made my blood boil.

Newby12
Newby12 in reply to Hamptons

And more about that Facebook support page:

“...Being someone with long COVID, or knowing a colleague with symptoms is now not unusual among medics, with around 350 doctors on a UK Facebook support group saying they are suffering from long COVID. Many more are believed to have the condition.

There is an even larger support group with 24,000 members from all backgrounds, mainly from the UK, and several other large groups with members from around the world.

Within the NHS, there is growing concern for the number of healthcare workers with long COVID, and the British Medical Association (BMA) is seeing it as an occupational health issue. ..”

"We don't know how much support they'll need, but we're offering the same amount of support as we would for chronic fatigue - which is my area of expertise...”

Sue_petal
Sue_petal in reply to Hamptons

LONG COVID symptoms:

news.sky.com/story/long-cov...

Muff20
Muff20 in reply to Sue_petal

Sue_petal my understanding of the long covid problems is that it's a post viral syndrome. Many of the viruses cause that. Chickenpox is one of the worse. Drs don't bat an eye at kids having chickenpox but it can cause so much damage to the nervous system. Maybe Drs will learn, they take too long to accept new ideas.

Sue_petal
Sue_petal in reply to Muff20

Hi,

Long Covid symptoms:

news.sky.com/story/long-cov...

Long covid symptoms:

news.sky.com/story/long-cov...

Interesting one in bbc about long Covid being 4 separate syndromes.

Sadly I appear to be in the permanent lung damage one. Some great discussions on long haul site re use of vitamins etc.

From the Sky News website:

news.sky.com/story/long-cov...

Long Covid:

“...Dr David Strain, consultant physician at Royal Devon and Exeter Hospital, is setting up a long COVID occupational health unit for NHS staff in southwest England.

"We're looking at this as an occupational disease as most of our staff will have got COVID-19 at work," he said.

"We don't know how much support they'll need, but we're offering the same amount of support as we would for chronic fatigue - which is my area of expertise

"Chronic fatigue was already a grossly under-researched area but it appears to be one of the main symptoms we're seeing in long COVID sufferers.

"But, we're also seeing a whole range of symptoms that don't fit with any chronic fatigue symptoms, so it's going to be difficult but we're adamant this needs to be recognised."

He also said that anybody working in a hospital with a COVID-related illness should be granted special leave so they do not have to take sick leave, which long-term, can affect their employment.

Other doctors have told Sky News of several partners in GP practices being let go because they are unable to work for six months due to long COVID...”

Seems like this virus is hijacking the entire immune system giving lupus like/AI symptoms “brain fog” etc included but hugely accelerated😒.

Hopefully no more gaslighting of AI disease sufferers from doctors?!

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