Been a while

[MsAndyIvy]

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

[weathervane]

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

[MsAndyIvy]

My diagnosis is ‘demic’ lol.

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

[whisperit]

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

[MsAndyIvy]

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

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

[Hidden]

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

[DRunnerchick]

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.

D🏃🏽‍♀️

[KayHimm]

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.

K