I wish I could take my entire body to the shop an... - LUPUS UK


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I wish I could take my entire body to the shop and request a refund!

Amakura profile image
15 Replies

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.


15 Replies
suzannah16 profile image

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

Amakura profile image
Amakura in reply to suzannah16

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.


suzannah16 profile image
suzannah16 in reply to Amakura

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.

Amakura profile image
Amakura in reply to suzannah16

That would also make sense as I have secondary sjogren's. Good point about the phlegm.

Hope your daily transition works sooner or later


happytulip profile image

Did they do an ECG and rule out pericarditis? It's not always obvious on an ECG in the early stages of a flare.

Although you don't tend to get phlegm with it.

Pred would probably help the flare but it's s risky time to be on it.

It sounds like you need a follow up with your GP if your symptoms are persisting.

Hope you feel better soon

Amakura profile image
Amakura in reply to happytulip

They done an ECG and that was absolutely fine, which I knew it would be.

The Rheumatologist said exactly what you have written - it's way too risky. Although, I was on steroids for over one year - only stopped in October last year - and during that period, I didnt get any infections, colds, you name it througout that entire period. However, when I wasn't on steroids or even Hyrdoch..., I was constantly getting infections and I was popping antibiotics like Smarties. I was literally rattling and I mean, literally.

In a nutshell, since stopping the steroids, which I absolutely hated, I'm slowly going down hill but not at a rapid rate, thank goodness but just like everyone else, the fatigue is a bugbear. It's like having a humongous acne spot located on your face for everyone to see. You cant get rid of it until its ready. It's in control and your not! Anyway, I digress...

I had a follow up with my GP this week and she said it was difficult, as she is unable to physically see me. She can always tell by my physical appearance, as soon as I walk through the door, when I'm ill or when something is up. However, you've repeated exactly what she has said, give one more week, and contact the surgery again.

Thank you so much for your response.


Salzer profile image
Salzer in reply to Amakura

Hi Amakura. I had really similar flare symptoms for about a month with worsening chest pain and eventually managed to get an urgent appointment with my rheumatology team on Thursday, hoping they might give me short course of steroids too. But was admitted to hospital instead to check for pericarditits. Lo and behold that's what it is. Didn't show on the ECG which they said is common, but did show on an echo cardiogram - a heart ultrasound. They also did a chest xray. Sitting here waiting for them to let me go home now as I really don't want to be in hospital right now! If the chest pain doesn't go might be worth contacting your rheumatology team. Good luck. S

Amakura profile image
Amakura in reply to Salzer

Thank you so much for responding whilst you are trying to recover. Really appreciate it.

Unfortunately, I'm stuck between a rock and a hard place, as they said a couple of weeks ago - the Rheumatologists - as my observations including a chest xray is clear they are not that concerned. However, since then, there has been a change and the chest pains persist. I will try again but and I'm sure this is a typical lupus sufferer thing to say, I don't want to become nuisance but I am struggling.

I really hope they will resolve your issues and you are able to return home.

Thank you again x

Whippet_lady profile image
Whippet_lady in reply to Amakura

Could you take a short video of yourself and send it to your doctor somehow? Maybe phone them to ask how to go about doing it?

Amakura profile image
Amakura in reply to Whippet_lady

Very good idea and I will do that. Never thought of that. Forgot, at this time, technology is there to help.

Thank you.


Hi Amakura your symptoms sound pretty much what I'm going thru now except my is related to Costochondritis.

I have Mild SLE and fibro it's been over a year since I last had this, pain is awful especially when moving I.e walking. I was told to take paracetamol and rest until it subsides. It just started out of nowhere I been at home 3wks due to lockdown. Yesterday I felt it coming on right side is swollen to touch.

Maybe ask the rheumy if it could be related? Take it easy and rest up get well soon. 🙂

Amakura profile image
Amakura in reply to

Thank you so, so much for your reply.

They did, at one stage, mention that it could be that but due to the pandemic, my Rheumatologists were unable to confirm as our interactions are only via the phone.

I tried paracetamol and it didn't work. I then progressed to the hard stuff, co-codamol and it didn't even touch the sides. Not even my inhaler worked and I use a high steroid combination one.

I finally spoke with my Rheumatologist, as the pain had increased and the more I spoke, my breathing became more difficult. They have finally prescribed a low dosage of steroids for a 2 week period, an asthma dosage. So, I'm hoping it will nip it in the bud as I'm losing weight, fatigue... etc. The standard lupus shopping trolley of wonderful flare symptoms.

Is the Costochondritis pain like someone jabbing your chest with an extremely sharp needle and your chest feels like it's caving in, pressure like feeling, by any chance?

Exactly it can radiate to upper back arms and even legs. I was struggling to stand for long periods at time feeling drained etc. My hubby keeps a stash of some strong paracetamol ( from india) lol which actually helped. I have taken 1 and half days of dose and the pain has subsided considerably including swelling. I couldn't be bothered with GP same old ringmerol plus with all this going on.

It will take time to subside try to rest as much as possible. Try to avoid anything to strenuous as that just adds to it. Wishing you a speedy recovery. 🙂

Amakura profile image
Amakura in reply to

Thanking you again - you're a diamond! xx


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