Hi, I am a mid 50’s female and diagnosed from childhood with asthma that became brittle asthma from my 40’s. I was under a specialist centre 9 years ago when I was in and out of hospital every 2 weeks for 6 months with only being able to take small breaths. It feels like there is a concrete bandage tightly around my chest stopping me from taking a deep breath!
After 6 months I seemed to get better until December last year when it all flared up again.
My oxygen levels drop to mid 80’s on any exertion (walking or going up stairs) but recover as soon as I sit down.
My normal heart rate of 58 shoots up to 120 plus (up to around 180) on any exercise at all - even just walking up stairs, recovering again to normal as soon as I sit down or stop.
My peak flow has plummeted from usual 450 to 120 but nebulising only has an effect for about 2 hours. The only thing that makes any difference is IV Magnesium sulphate that I am having to have as an outpatient every 2 weeks as the peak flow slides again over that 2 week period until I am so bad again I have to have it again, yet by end of the 3 hour infusion I can breathe normally again?!
I have a feeling of pressure above my forehead that gets worse on exercise, the joints in my hand are swollen.
I have a very dry mouth (even dentist mentioned it at last check up) and dry eyes.
I often have a gravelly voice, particularly when things are bad with my peak flow, but that immediately goes back to normal after the IV.
I also have a constant feeling that someone is pressing against my throat, plus sharp pain on left side of my neck when I turn my head left.
Across my upper back is a feeling of such intense bruising that I can’t lean back on a chair back without being in significant pain.
Wrists achy and weak, but I also have fibromyalgia so never know what to blame on what?!
My hands always feel cold and are for anyone to the touch too.
My nails have vertical ridges down all of them and now getting splits down some of the ridges!
All a bit weird. GP and Respiratory team at the hospital are stumped. CT, bloods all normal. Only abnormality they see so far is restrictive spyrometry. Next tests are echo but one Respiratory Consultant is thinking maybe autoimmune?
They are just not sure whether to refer me to rheumatologist, cardiologist or neurologist. A friend of mine is already in this group and spoke very highly of the support so suggested I put this on and see if there are any suggestions for routes to take?
Thanks for listening to me