Newly diagnosed

[Othello123]

Had call from gp on Monday, all tests came back saying lupus, but cant refer due to lockdown, also have heomocromatosis pain is unbearable at times, any advice please, should I be self isolating?

[happytulip]

Welcome Othello! You've found a fantastic forum that has really amazing support from all the team at Lupus UK. There is also a vast amount of support and experiences to be shared amoungst the members on here.

You must be in that dazed/shocked stage of being diagnosed with lupus. To have that on top of heamochromatosis is tough.

It's late and I suspect you've had to take alot in today but I would advise you to scroll down and find the advice about lupus and Covid19. Ultimately, according to Lupus UK advice as I understand it, you should be self-isolating.

If you are in alot of pain then I would stay in close contact with your GP at this early stage of diagnosis simply because lupus can be a bit of a confusing maze when you are diagnosed. No one seems to have the same symptoms or experience so you have to find your own path. But do that with help. It's such a shame that you are unable to see a Rheumatologist at this time because of CV-19, which is why it is vital that you get your GPs support early on to get any inflammation and pain under control.

And keep posting on here and asking questions. You will get lots of support.

HT

[Flock17]

Hi othello123

I agree with happytulip that it’s a confusing maze, when you are first diagnosed with lupus.

As above symptoms and ways of dealing with them are all very different, from my experiences, over the last 30 years of living with lupus,my advice at this stage would be rest, rest, and more rest - as much as you can possibly get. Don’t try and do too much. The dust and the fluff will still be there tomorrow or the day after. Take it easy and give yourself a break accept any help that’s offered.

A lot of people just do not understand what lupus is. When we look pretty healthy and well, we are generally feeling pretty “yuck” (for want of another word) so they just don’t get it!

And yes... stay in touch with your GP

And remember don’t beat yourself up about not being physically or mentally able to do things for the time being.

It’s taken me a long time to get into that frame of mind but it really does help and make a difference to be able to just focus on yourself and what you need, not what needs doing around the house/work etc.

I know all this doesn’t help with your pain relief and that you haven’t been able to get a referral yet, but I hope it goes some way to showing you that you can emerge from the other side.

Take care

[KayHimm]

Othello123 - It is always hard to be diagnosed with a chronic illness. And in the middle of a pandemic the stress is even greater. Know that you will be safe. There are systems in place at all levels. I just listened to a chair of neurology talk about all they have done to mobilize for the COVID 19 crisis and yet keep all patients safe.

Your GP is perfectly capable of monitoring your kidney, heart and liver function. They will be able to communicate with any sub-specialist and get you an appointment if necessary. Please tell your GP of your concerns. You need reassurance. Anyone would.

I wonder if they will relax some guidelines in the UK since you cannot see a rheumatologist immediately. Ask the GP if they recommend taking Hydroxychlorine. All lupus patients are supposed to be on that drug. And it may be helpful with COVID 19.

Reach out if you need support.

K

[whisperit]

Hello Othello123

happytulip has given excellent advice. You do need to self-isolate, and you need to keep in touch with your GP to manage this new condition. I wonder if it is worth asking them whether you could have a remote/video consultation with the Rheumatology Dept?

Keep in touch anyway x

[Spotty-ewe]

Welcome to the forum Othello. I’ve nothing to add to the excellent advice already given by those who replied before me. So I wish you well and do let us know how you get on. Keep us posted! 🤗🌺🌼