Reduced mobility

[eescvc]

On Thursday 4th I had a physio session. She took muscle strength and endurance tests and was worried about the results.

On the Friday I had a phonecall asking me to see Rheumatology on Monday 8th for an emergency appointment.

At the appointment they told me they wanted to admit me to hospital for the week for steroid infusions and further tests.

I was in hospital from Tuesday 9th to Friday 12th. The steroid infusions haven't helped massively. I actually now feel worse.

The current situation is I have a few tests with neurology lined up over the next couple of weeks and my next Lupus clinic appointment is mid September.

What do I do in the mean time? I'm not able to walk today I'm so weak and in pain. And this doesn't seem to be improving. I can't cope like this for 2 months.

[Georgie-girl]

Hi. Sorry you're in so much pain. I cant really offer much in the way of advice but you shouldn't have to suffer like this while waiting for your next appointment.

I would suggest phoning your rheumys secretary and explaining things and asking if you can maybe see him sooner to get this sorted or at the very least get some advice or medication.

Also try your GP as they can get you seen quicker.

Sorry I cant be of much help but I do hope you get something done for your pain.

Take care.

[Hidden]

Sorry you have such disabling symptoms and no answers yet. I’m guessing that a lot now depends on your test results and forthcoming neurology assessments. They won’t be keen to offer you treatments such as physio or pharma or advice until they know what’s wrong. Given they need neurology to assess and test results aren’t always quick to be interpreted - September seems quite reasonable as it’s only 5 weeks away.

I realise it must seem like an age to you of course but I think this is how it will have been planned because rheumatology can’t diagnose or treat you without assessment by neurology.

Best of luck and hope your problems miraculously disappear or are discovered to be very treatable 🤞🏽🤞🏽🤞🏽😊