Do something or not?

[Neriah]

I don't often post, but would appreciate some thoughts today please, people.

I have lupus nephritis and am at home self isolating. I take 200 mgs hydroxychloroquine and 50 mgs losartan a day and I have had several Rituximab infusions, the last being a couple of years ago. I had some sort of virus last February, which I still haven't really recovered from and I am lethargic and easily tired, although blood tests in March were stable.

Over the last few days I have developed stomach pains, slight nausea and dizziness and (if possible) am even more tired. Apparently these can be symptoms of Covid19 - who knew? However I do not have a cough , a temperature or breathing problems. And the stomach pains and dizziness are more vague than acute.

The question is, do I at this stage 'bother the doctors', which I am loath to do - don't want to be a timewaster, especially a timewaster with a load of vague symptoms - and also don't want to start trekking round waiting rooms etc etc.

Actually, writing this, I think I may have answered my own question; ring lupus nurse and explain dilemma.

However any thoughts from anyone would be welcome. Thanks

[happytulip]

Phone GP. You are experiencing dizziness and other symptoms. Not everything is down to covid and significant symptoms shouldnt be ignored.

Ask yourself, if a pandemic wasn't happening, who would you call?

[Neriah in reply to happytulip]

Yes, thanks for the question. I realise I was unconsciously thinking that I really mustn't make a fuss about 'minor' symptoms in the present circumstances. In the event,I called the lupus nurse and got through to her straight away. Sensible advice - drink plenty of water, try and exercise, remember roughage etc. If no improvement in a few days, call back and they'll get me an earlier phone appointment with the doctor. Feel reassured.

I think if I'd gone the GP route, it would have meant a lot of waiting around for returned phone calls and frustration because GPs are not necessarily up to speed on lupus. Reading some of other people's experiences on here, I realise I'm very fortunate to have such easy access to good advice and treatment.

[happytulip in reply to Neriah]

Are you certain that you feel ok? The only reason I ask, (and please don't be alarmed at this), it's just that nausea, abdominal pain and dizziness are associated with cardiac events in women. You don't have to experience chest pains or shortness of breath and many women don't.

I'm sure your lupus nurse is great but just because we have lupus doesn't mean that any and all symptoms we experience are lupus related. A lupus nurse might only be thinking about a lupus related cause.

Just like going to an orthopedic doctor with a painful joint, they would be looking for an orthopedic cause instead of an auto-immune one.

I'm don't know your age and won't ask but you have mentioned three symptoms that together would warrant an ECG.

If you feel ok, then I understand. But if you are in any doubt I would have a hard think about your symptoms and what you want to do. The NHS is still looking after non-covid patients.

The British Heart Foundation lists these three symptoms with others as symptoms of cardiac event in women. Sometimes it has a very different presentation to men. But of course, I'm not trying to alarm, just share experience. And it may be absolutely nothing at all. Just couldn't not share the info.

HT

[Neriah in reply to happytulip]

Thanks again, I've never had any heart issues, but you are right to draw my attention to this. What I'm doing is having an early night and seeing what I feel like in the morning. I'm feeling better from having been reassured.: which is not to say I think I'm imagining my symptoms, but that I'll keep a close eye on them and reassess tomorrow.

Thanks for your concern

[happytulip in reply to Neriah]

Hi, just wondering how you are doing? Hope you are feeling better.

[Neriah in reply to happytulip]

No I'm not to be honest. It seems to be centred around gut discomfort and sort of constipation and exhaustion. Occasional slight nausea and very dry mouth, which makes me think it may be more secondary Sjogren's related than SLE. I must stress it's more about crawling round feeling uncomfortable, than having a major crisis of any sort. But that activates my 'pull yourself together, other people are suffering more than you,' thing, which they are of course, in droves. But if I try to do that, I feel even worse!

What I hope is a sensible course of action: rest (copiously), light diet with plenty of fluids, distraction with cheering activities, meditation and all things being equal, after the bank holiday, get lupus nurse to expedite my next appointment. Strictly avoid giving into any kind of self blame or attack or 'should'or 'ought' , in the meantime.

Thanks for your concern. It's appreciated, especially as I know you are one of those who has it worse than I! On we go...

[happytulip in reply to Neriah]

Although the pandemic is happening you still have an underlying medical condition that can't be ignored.

Don't leave it to late to get medical advice if you think that you need it.

Rest up.

[WinterSwimmer]

If you have nephritis you should bother the doctor.

[Neriah in reply to WinterSwimmer]

Thanks Winter Swimmer. You are of course quite right to remind me of the seriousness of nephritis. It's all to easy to think one should pull oneself together and not make a fuss. As you can see I got in touch with my lupus nurse, which feels okay. I'll see how I go from there