Been a while: Hi All Hope everyone is good. Not... - LUPUS UK


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Been a while


Hi All

Hope everyone is good.

Not been about for ages- back to work and ME/Fibromyalgia has put any sort of additional stuff to one side.

Been told it’s deffo ME, fibromyalgia and migraine with peripheral neuropathy in my feet/ lower legs.

Arms, right side of face now have a rash.

Have become wheat/gluten intolerant- bloating, pain, diarrhoea etc

Have had two cancer scares in a year -skin and ovarian.

Left bottom lip now numb as is right side of face to to a lesser extent.

They still keep testing for Lupus but now mentioning Sjorgen’s too.

Hey ho! Onward and upward. Back off work too

7 Replies

You have been through it recently, I hope you are able to get a diagnosis soon xx

My diagnosis is ‘demic’ lol.

As with many chronic conditions there is not much they can do. Just carry on and keep smiling!

Hey there MsAndyIvy,

The idea isn't to collect as many diagnoses as you can, you know. Coco already won that competition.

Glad to see you here, though. Have a gorgeous day x

There’s a competition!!!!! Great. I’m in. What’s the prize?

Life supply of paracetamol, a large tube of voltarol and supper stockings?


Hi there - nice to see you back.

I just wanted to say that I have had degree of numbness everywhere including lips and gums and I have Sjögren’s.

Look up small fibre neuropathy (SFN). A significant number of those diagnosed with Fibro will actually have SFN - if anyone bothers to test by doing punch biopsies from legs.

As you know already I’m sure - Sjögren’s is very underdiagnosed and Fibro and ME almost certainly overdiagnosed. And yes I do feel that the two are intrinsically linked!

If absolutely nothing shows in blood then it’s less likely - but you can still have autoimmune diseases.

The good thing about having a lip biopsy to test for Sjögren’s if your lip is already partly numb - is that you won’t even notice if there is still some numbness after! X

Good to see you back. Really though, the only competition makes you PAY for the privilege....still want it? I'll send you a pair of stockings if you'll forget about it 😂

Hope you're feeling better soon.


Oh, these illnesses are so elusive. TT posted an excellent video that puts forth a new thinking on neuropathy. I think you might find it helpful. It sounds like you are really struggling. Something must be making them see an autoimmune connection with you.

I have a rare autoimmune neuropathy. Happy to answer if you want to message me.


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