Is this permanent?: Hi friends, I’ve now been off... - LUPUS UK

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Is this permanent?

MusicalFurbaby profile image

Hi friends, I’ve now been off work for 8 weeks with chronic extertional breathlessness, still no diagnosis. It started with the flu (not COVID) and never went away. Starting to wonder if this is becoming a permanent disability. I’ve been for tests and doctor’s appointments every week, sometimes every day. Most results so far are normal, except for low complement C4 (indicative of a lupus flare) and really strange arterial blood gas results which the specialist couldn’t explain. Had a repetitive nerve test last week with the neurologist which was mostly (?) normal, one result was inconclusive. Neuro said that while it is highly unlikely to be positive for myasthenia gravis, it was still possible, and he will refer me for further testing if I want…in the meantime, I’m lining up a cardiopulmonary exercise test, and awaiting results for blood serologies and a heart scan.

As much as I would like to ask the community here for answers, I realise no one here can tell me what’s going on for sure! So I guess I’m looking for a bit of cheering up (pics of furbabies welcome) but also if anyone can relate to becoming disabled after a virus. I’m worried about never being able to work again—I’m a counsellor but I can’t talk for more than a few minutes, or walk anywhere, without severe breathlessness. Can anyone else relate? How did you cope with the notion of losing your career? Thanks guys!

29 Replies

I hope this gives a smile MFBaby. I’m so sorry for your illness. I see hope here not despair. Some virus’s linger and fade away. Let us know how you progress. 🥰xxTitters

Son’s Lab at the beach

Thanks Titters 🥲💜 Your furbaby is gorgeous!

Awwww! What a cutie! Thanks for sharing.

Healing hugs.

Hi there

I apologise now for this long winded tale!

I just wanted to say that after a very heavy cold, I developed a really bad cough, which just wouldn’t go away. My breathlessness was off the scale and I found I couldn’t walk 5 yards without breathing problems, even washing up made me have to sit down for an hour afterwards!

After 3 or 4 different antibiotics, which didn’t work, I was finally sent to see a chest consultant who diagnosed Bronchiectasis. He said it was something resulting from my cold but it was also something that is especially prevalent in lupus sufferers. It did take about 4 to 6 months altogether before it went away and now I seem to be fine. So just to say don’t despair, there is hope!

I am sorry that you’re feeling ill and hope you feel better soon.

Thanks Bakbre! I’m glad yours eventually resolved, thanks for sharing your story. I’ve not heard of bronchchiectasis, is that something that would show up on a scan? I’m genuinely curious about this, as all my chest/lung/heart scans have so far come back normal. 😊

If there is phlegm to clear (as in Bronchiectasis) Active Cycle of Breathing Technique may help.

bronchiectasis.com.au/resou...

I once had a chest infection where high strength Vitamin C also helped (1gm / day).

The lady sitting next to me at the doctors surgery, in the waiting room, said it had worked for her and gave me the advice.

Thanks for sharing, StriatedCaracara. I don’t have any phlegm—which probably adds to the mystery! Thanks for the vit C tip as well. 👍

Bakbre profile image
Bakbre in reply to Bakbre

No it didn't show up on my scans either at first, they all came back normal. Then I had a CT scan and that is when it showed up. Apparently in people with Rheumatoid Arthritis it is quite common. I have RA as well as Unifferentiated Connective Tissue Disease. Bronchchiectasis is a disease of the small airways and medical tests help determine if you have bronchiectasis and, if you do, what caused it. Symptoms of bronchiectasis may include frequent coughing, sputum (mucus) production, fatigue, repeated chest infections, acute shortness of breath, unexplained fever, chills, sweats, weight loss and in extreme cases, coughing up blood (hemoptysis).

There is often no cure for bronchiectasis, but it can be treated. A computed tomography (CT) scan (which is a special type of X-ray test) is used to diagnose and/or confirm bronchiectasis. A CT scan shows a very detailed picture of your lungs, and your doctor can see the widening of the airways to know how much of your lungs are affected.

Another common test for evaluating bronchiectasis is the pulmonary function test (PFT). A PFT is a breathing test that measures how much air moves in and out of your lungs and how fast it moves. This test helps your doctor understand how well your lungs are working. It may also help determine why you have shortness of breath.

I hope this helps.

Thank you so much Bakbre. I don’t have the cough or phlegm, which in some ways has added to the mystery of this whole affair. I’ve had repeated CTs, including with contrast—all normal. Truly, this is a mystery! I’ve had lung function tests which also showed up normal. Going back to my pulmonary physician today to request a cardiopulmonary exercise test. Hoping this will shed some light, especially considering my ABG results were so abnormal. Wish me luck! 😬🤞

My hubby has the same symptoms along with chest pain. Lots of tests later suggest lupus but a chest CT showed a nodule on his lung, a PET scan showed it to be non cancerous. We are still waiting for a diagnosis and some treatment for all his lupus type symptoms. Meanwhile he has not been able to work since January.

Hi Broseley, I’m so sorry to hear about your husband being sick and not being able to work. Mine has been consistently severe since April, no better, no worse, and I’m not able to work because of it. With no end in sight, I’m off work indefinitely. Seeing my lung specialist tomorrow, awaiting further tests. Solidarity to those of us who wait! 👍💚🙌

It is a shame we have to wait so long, while being undiagnosed means you can't claim any benefits. He has been suffering since January 2021, but GP referral to rheumatology would have involved a 18 month wait so he went private. He was then referred to the NHS chest clinic. All they seem concerned about is his chest, the other symptoms are being ignored. The tests seem to be endless repeats of the same ones he's already had. Good luck with yours!

Krazykat26 profile image
Krazykat26 in reply to Broseley

Are you sure about that Broseley? 🤗 The reason I ask is that I applied for and was successful with ESA before my lupus diagnosis. Your husband is unable to work due to ill health and he's being investigated..as long as you can prove that it doesn't matter that he's undiagnosed. Unless it's changed its more about how his health is affecting his daily life.Check out Citizens Advice or there's a good website called Turn2Us. You may find that your husband is entitled to claim. 💜🌈😽😽Xx

Broseley profile image
Broseley in reply to Krazykat26

Thanks, I will!!

Thanks for sharing this Krazykat! 😁👍

Thanks Broseley, sorry to hear about your troubles. I concur with Krazykat, I am applying for benefits right now as I’m unable to work, even though I’m still under investigation and not yet diagnosed. Mind you, I’m sure the situation is different in Australia. But definitely worth checking out. Good luck to you! 👍

Thanks. I'm in the UK though! He says he'll look into it.

When you see your lung specialist ask to be tested for Meta virus.I am told that only a few hospitals test for it but its worth pushing if only to rule it out.

This virus clears up on it's own in 'healthy people ' but can be serious for people with lung problems.

Good luck and be really pushy getting a sword to any questions you may have.

MusicalFurbaby profile image
MusicalFurbaby in reply to Kcn3

Thanks Kcn3, I’ve been tested for Metapneumovirus—is that the one you were thinking of? It came back normal 😊

'Answers ' not a sword. Sorry typo. You may get arrested if you use a sword🤦‍♀️

😂😂 I’d rather use a pen, which is mightier!

Hi. This may sound weird but have you been tested for Asthma? I had exertional breathlessness (just bending over to tie my laces could trigger a 20 minute episode) for 3 years and the lung function tests were all normal. Physiotherapist insisted I ask for an asthma test. Air intake improved by 19% (14% is the cut-off, I think) after nebuliser. It was the darndest thing. Hope you feel better soon.

Broseley profile image
Broseley in reply to LupieMani

That's interesting. Hubby gets the same problem with bending. I'm convinced I had undiagnosed asthma as a child. I used to get really bad coughs that lasted weeks and weeks. Chest Xrays were all normal.

LupieMani profile image
LupieMani in reply to Broseley

That does sound like asthma. It doesn't show up on x-rays and the swelling and mucus would build up at night. I used to cough violently but no real phlegm. Still get that sometimes - Nasofan is a massive help.

Broseley profile image
Broseley in reply to LupieMani

Thanks, I'll get him to try it.

Thanks LupieMani, that’s not weird at all! Yes they tested me for asthma by giving me ventolin during spirometry. It made no difference at all. We’ve ruled out asthma as a result. Glad you finally got yours diagnosed. 👍

Hi,I suffered severe exertional breathlessness for over 9 years before I was treated. I had pleurisy, tietze ( similar to costochondritis with swelling) and pulmonary vasospasms. The first 2 are common in Lupus, the last rarer & a symptom of scleroderma.

My point, the NHS found it difficult to diagnose because I was describing 3 different conditions. They couldn't unpick them until each was treated. The Tietze responded to naproxen, but really went completely when I was treated with steroids for the pleurisy.

The pulmonary vasospasms were never identified by the NHS. I went privately to a consultant at the Royal Brompton, a tertiary referral centre for respiratory illnesses. We choose the consultant because they specialised in rare autoimmune conditions & they recognised the condition immediately. I'll PM thier name.

My advice, allow the NHS to complete thier investigation. Remind them you may have more than 1 thing wrong & both pleurisy & costochondritis are very common in Lupus, but know there is somewhere to go when they run out of ideas because this almosted ended me.

Take care,

Sarah x

Thanks so much Sarahsch! Unfortunately I live in Australia so I won’t be able to use the service you recommended, but maybe someone else on this forum can. I’ll look into those conditions you mentioned, as some of them are rare and I’ve never heard of them before. That’s interesting to hear your experience of steroids—my doctor and I have been discussing that. Thanks again 👍

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