Breathlessness ?

[jimbo1605]

Does anyone have breathlessness and a heavy tight feeling around the lung with pain ?

What could be cause ?

What helps medications etc

My wife has all the classic symptoms of sjogrens along with severe brain fog and constant breathlessness - both respond to steroids and she is in the early stages of taking hydroxy.

[misty14]

Hi jumbo

It's lovely you've joined the forum to help your wife. There are a lot of reasons for your wife's symptoms including pleurisy , intetesting that they respond to steroids, proves its inflammation!. She needs to be checked by her GP if she's suffering once more. Good luck to her for Hydroxy. I hope it helps . X

[jimbo1605 in reply to misty14]

Thanks Misty14.

She has been checked by a few respiratory consultants and they say she is normal - peak flow, spirometry and oxygen sats but the breathlessness and heaviness on the chest persists

[misty14 in reply to jimbo1605]

Hi jumbo

She might have pericarditis which is inflammation of heart lining!. We can't diagnose her on here but I've had those symptoms. Is she due a Rheumy visit?. You could try to bring it forward or if the breathlessness worsens or gets chest pain she needs to go to A&E. There are other tests she could have that might show what problem is. Do hope she is better soon. Anti inflammatories or steroids treat pericarditis very successfully. Good luck X

[jimbo1605 in reply to misty14]

Thanks Misty14, she took 30mg of steroids in one dose over the weekend and within 24 hours the breathlessness improved significantly. We are due a consultant visit and will raise pericarditis with them. thanks for your post. jim

[misty14 in reply to jimbo1605]

Hi jumbo

Certainly proves its inflammation affecting your wife. Let me know how you get on at consultant visit. Hope it goes well. X

[whisperit]

Hello jimbo,

Shortness of breath and tightness around my chest is one of my predominant symptoms. I don't for a moment want to try to diagnose your wife - her issues might be quite different. But for me, the main causes are lung inflammation (a part of my UCTD, and diagnosed by MRI) and - maybe surprisingly - gastritis (which I have had for many years). Luckily, hydroxy plus steroids has controlled the lung inflammation very well, and lansoprazole is currently doing an excellent job in sorting out the gastritis.

Hope things settle soon x

PS Misty14 has given you good advice - do make sure your medics are fully aware of chest symptoms - don't be shy of making an urgent appointment if you are at all worried

[sarahsch in reply to whisperit]

Whisperit - interested that it was diagnosed by MRI. CT scan with contrast is usually offered & for me showed nothing despite being in terrible pain. Did you have CT scan first? Did it show anything.

Sarah x

[whisperit in reply to sarahsch]

Yes, I had CT later, which I think was used to confirm it. I had cardiac/chest MRI first because I had been initially diagnosed with heart failure (at that time, there was no suggestion of an auto-immune disorder) x

[jimbo1605 in reply to whisperit]

Hi whisperit,

My wife does have reflux and is prescribed losec but rarely takes it - so we are going to try taking it regularly.

Lung inflammation has been dismissed by the respiratory consultant - but i dont dont know how because they have not done an MRI or CT. (we have a great rheum consultant but the respiratory folk are very unhelpful)

thanks for your post jim

[Hidden]

Hi there. I have Sjögren's and also am suffering from some breathlessness and my larynx often feels as if it's swollen so my voice has little power - especially by the end of the day. I've been tested - had CT of lungs last year and had no lung involvement at that time. I think mine is maybe more asthma like and I do have a long history of eczema plus post gerstational asthma. I don't have a proper cough but am always clearing my throat and have a low key ticklesome cough. I do have GERD and gastritis but these are well controlled by meds.

The front of my mouth is not particularly dry I'm told. So my feeling is that this is just another of many symptoms relating to Sjögren's fatigue and autonomic dysfunction for me. Could be similar for your wife perhaps?

[jimbo1605 in reply to Hidden]

Hi twitchytoes (my wife incidentally had twitchy toes (and legs) as part of this condition - does the name come from this ?)

This seems to be coming from the lungs and is like a tight band around particularly the right lung that makes breathing more difficult.

thanks jim

[Hidden in reply to jimbo1605]

Yes my pen name is definitely linked to Restless Legs and the neuro symptoms of Sjögren's.

I have read that forward thinking doctors and researchers are increasingly certain that Sjögren's is principally a systemic neurological disease. It's all to do with the M3 receptors apparently but I'm no scientist so can only report what I've read. So I now think along the lines of MS where it comes to lots of my symptoms and I find this helps me to make sense of them better.

And I've also learned that primary and secondary distinctions are no longer thought to be relevant. Sjögren's is increasingly becoming recognised as a stand alone disease very like Lupus. A person can have it mildly - so it hardly affects their overall lifestyle -or severely so it makes life very hard indeed. There are those who merely apply a few eye drops daily and suck sugar free sweets and get a little fatigued, have a bit of tingle and numbness in their feet but nothing too bad.

While others have to be fed by tube and have lung, liver, kidney and brain involvement or central nervous systems that are disintegrating rapidly. So there's a huge spectrum but it's mostly all about the peripheral or autonomic nervous system for anyone with Sjögren's. Hope this helps a bit - no treatments yet though other than topical ones. Hydroxy does help many to function better but ultimately it's not really targeting the neurological aspects of disease.

[jimbo1605 in reply to Hidden]

Gaberpentine at night has helped my wife - she had terrible twitchy legs and I regularly would be used as a football.

Thanks for the thoughts on neurology. My wife and son both have lots of neurolgical stuff - raindrops when there are none, visual disturbances twitching, electrical shock, stabbing.

thanks jim

[field]

I have lung issues and experience same symptoms as your wife.

U cannot go by stats. My stats r all normal and i currently have organising pneumonia. I went to gp who listened to my lungs and said she could not hear anything and sent me home. Two days laterxa ct scan showed i had pneumonia.

Ask for a ct scan as my gp says if there is inflammation in lungs it may not so up on an x ray as x rays only show front of lungs and often dont pick up inflammation.

All the best.

[jimbo1605 in reply to field]

Hi Field,

Our respiratory docs have dismissed inflammation based on bloods, lung function and xray.

We will press more - and thanks for sharing your experiences.

jim

[Cas70]

I bet this is to do with the Sjogren's as I have something similar. The Hydroxy should help but keep pushing for them to alleviate her discomfort. If she has persistent cough I suck Jakemans menthol sweets - really help my breathing too. Good luck

[Joyandsleep]

With my lupus this happens a doctor told me it was inflammation around the lungs the thin layer it should be treated with anti-inflammatories it almost feels like you have a heart attack the pain can be so strong he said it was very important not to put off treating it

[sarahsch]

Hi Jimdo,

lots of good advice here so won't repeat. Just to say I had what you describe. Never showed on any test or scan. Took anti-inflams for a year until new Rhemy tried hydroxychloroquine & it worked a treat. Kept inflammation down with much less risk of serious side effects. It can take some time to work though, so hang in there.

All the best to you & your wife. Let us know how you get on.

Sarah