Hi there
I've been suffering from some very unusual symptoms - well, maybe not unusual to some - and it's becoming very irritating. Basically, I have intermittent dull and sharp chest pains, eye pains accompanied by fatigue and extremely cold feet (which now resemble sand paper) plus my appetite has gone awol and extra hair loss. I only eat, so I can take my meds (Hydroch... can't spell it).
I have been sensible and all of my observations, up until a couple of weeks ago, were absolutely fine but I can only now walk a very short distance before becoming breathless, tired and that wonderful pain kicks in. I am producing phlegm but this is only more noticeable in the morning. Accident and emergency suggested, a couple of weeks ago when I didn't have the phlegm, it was the beginning of a flare and recommended that I go on a low dose of steroids. I was hesitant and awaited telephone confirmation from my Rheumatologists who stated the complete opposite: they were against the course of steroids due to the pandemic. They preferred for me to increase my high dose steroid inhaler (Fostair 200/6) and paracetomol (pls excuse the spelling) and as a second line, co-codymol to ease the pain.
Not sure what to do. It's annoying because I'm so exhausted.
Has anyone else experienced this or should I take my body to the local supermarket and demand a refund? Ohhh, its so annoying and not ideal during this crisis.
Help!!
Am I pushing my body too much?
I stopped taking my medication...
Why are we all struggling just now? Is it atmospheric mould? Am sure it isn't Christmas!
Suddenly Stopping Steroids
I know what you mean about a refund, wish I could go get a service like a car.
I had a really bad flare which sounds similar to yours a few years ago. I was so tired I couldn't eat because chewing and swallowing food was too exhausting. I ended up just eating soup and gradually adding some bread until I could eat again. lasted for a couple of months and then another couple of months to get back to normal. I was only at the begining of my lupus diagnosis then and knew very little and didn't even think of contacting my rheumy. I didn't have a cough like you but the fatigue was all consuming. luckily I haven't had it that bad since maybe because I have more medication now. I hope you feel better soon xx
Exactly, like servicing a car. You said it better than me and thank you.
Sorry, didn't explain properly. I havent got a cough. I just produce phlegm in the morning and thats it. Are you on hydro... (can't spell it)?
I've been diagnosed with Lupus just over one year.
I suppose I just have to sit with it until it decides to retire, huh.
Thank you and I hope I also get rid of this sooner rather than later.
x
I get a bit phlegmy in the mornings but then I think it's because I sleep mostly on my back and I get a dry mouth from snoring, possibly dehydrate over night. I take 4 hydroxys a week, was alternate days but I have been slowly trying to get it to the daily tablet i'm supposed to be on. I get dizzy spells if I take it too often.
That would also make sense as I have secondary sjogren's. Good point about the phlegm.
Hope your daily transition works sooner or later
X