Hi everyone, just looking for some insight into something that has been plaguing me lately and I haven't gotten any answers yet, so for a little while now I've been short of breath doing things that normally wouldn't take any energy out of me at all such as a short walk up a hill or going up the stairs and to accompany it I've had a persistent very dry cough and chest pain which at times has been so bad I've been worried I'll keel over at any moment, I've had an X-ray which showed nothing and an ultrasound of my lungs and heart which also showed nothing, if anyone has gone through something similar I would love to hear your experience and what sort of answers you got, any insight is greatly appreciated, thanks
What could this be?: Hi everyone, just looking for... - LUPUS UK
Hi linorand the wolf
Sorry to read what difficult symptoms your battling at the moment. You could have inflammation of the lining of heart and / or lungs which doesn't show up on tests very well but is extremely painful. It's treated with anti- inflammatories and or steroids and I'm wondering if you've seen your Rheumy about this and what he suggests?. In view of asthma diagnosis has a short course of steroids been tried and or have you been referred for lung function tests?. If that chest pain ever got worse and didn't resolve you must go to A&E to be checked out!. I hope you get better soon. X
Hi Linorandthewolf . I get incredible shortness of breath and have had many many investigations. Although my lung function is never very good these days, it worsens considerably during times of flare. I have weak respiratory muscles and also small airways disease from the lupus/UCTD but it has taken several years of PFT's and follow up to arrive at this conclusion/dx. I hate it. I used to be able to do miles and miles at speed and now I can't manage more than a steady dog walk and that's a struggle. HTreatment is a via COPD inhaler, rapid antibiotic therapy when infection threatens and high dose oral steroids during periods of inflammation. My pain is episodic and pleuritic. Keep pushing for the dx. Doctors see lots of patients with chronic resp illness so tend to brush people like us off until our figures fall badly. Only you know the changes that are taking place. X
I feel this is worth mentioning: I have postural orthostatic tachycardia syndrome (POTS) and reactive airway - these can explain some of your symptoms. I was prescribed midodrine for POTS and an inhaler.
More recently though - and this is what I think could actually help - I started having a sharp pain whenever I took a full breath. It also felt more and more difficult to fully inhale. My doctor believed it was a minor infection in my lungs. My guts are extremely sensitive, so, instead of antibiotics he recommended nebulizing nano silver. 3-5 ml once a day. (Normally takes about 20-30 minutes to nebulize).
I still get short of breath and dizzy, but it no longer hurts to breathe and it feels like I can take a full breath when I inhale. Which doesn't sound like much but it makes a huge difference.
You can ask for a prescription for a nebulizer from your doc or you can order it online for a relatively cheap price. Make sure you buy NANO silver, not regular colloidal silver. The smaller particle prevents unwanted silver retention in lungs.
It could be worth a try. I hope this helps!